Download Unit 1 - Global Health Sciences

HIV/STI Surveillance for CAREC Member
Countries
Participant Manual
October 2007
Acknowledgements
This pilot manual was prepared by the Caribbean Epidemiology Centre (CAREC) in
collaboration with:


the United State Department of Health and Human Services, Centers for Disease
Control and Prevention (HHS-CDC), Global AIDS Program (GAP) Surveillance
Team
the University of California at San Francisco (UCSF), Institute for Global Health,
AIDS Research Institute through the University Technical Assistance Program
(UTAP) with CDC/GAP.
This workshop is sponsored by the following partners of the CAREC Special Programme
on Sexually Transmitted Infections:


the United State Department of Health and Human Services, Centers for Disease
Control and Prevention (HHS-CDC)
PANCAP—Global Fund and World Bank Projects
CAREC thanks the workshop participants, national epidemiologists, surveillance officers
and other public health professionals from the following countries: Trinidad & Tobago,
Guyana, Turks & Caicos, Anguilla, Antigua & Barbuda, Barbados, British Virgin
Islands, Dominica, Grenada, Montserrat, St. Lucia, St. Kitts & Nevis.
Funding for the initial creation of this manual was provided in part by the United States
Agency for International Development and PANCAP.
HIV/STI Surveillance for CAREC Member Countries
Table of Contents
Unit 1, The Global HIV/AIDS Situation and the HIV/AIDS
Epidemic in the Caribbean
Overview
Introduction
Trends (CAREC Surveillance data, 1982-2003)
Summary
Unit 1 Exercises
Unit 2, Biology, Transmission, Natural History, Prevention and
Treatment of HIV Infection and AIDS
Overview
Introduction
Biology of HIV
HIV Transmission and Natural History
Spectrum of Disease Following HIV Infection
Prevention Transmission of HIV/AIDS
HIV/AIDS Treatment
Summary
Unit 2 Exercises
Unit 3, Overview of Public Health Surveillance
Overview
Introduction
Public Health Surveillance
Surveillance Terms
Past Approaches to Communicable Disease Surveillance
CAREC Regional Communicable Disease Surveillance System
Major Changes in the Regional Communicable Disease
Surveillance System
Legal Basis
Strategic and Operational Plans
Reporting Chain
Data Transfer
Analysis and Interpretation
Dissemination of Information
Use of Data and Information
Monitoring and Evaluation
Summary
Annex 3.1. Syndromes and Communicable Diseases under
Regional Surveillance
Unit 4, HIV Case Surveillance
Introduction
What is Third Generation Surveillance?
Section 4.1: HIV Case Surveillance
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HIV/STI Surveillance for CAREC Member Countries
Table of Contents, continued
Introduction to HIV Case Surveillance
The Relationship Between the Natural History of HIV and
Surveillance
History of HIV/AIDS Case Surveillance
Sources of HIV Case Surveillance Reports
Section 4.1 Exercises
Section 4.2: Clinical Staging and Surveillance Case Definitions
for HIV Infection
Introduction to Clinical Staging and Surveillance Case
Definitions for HIV infection
History of Clinical Staging and HIV/AIDS Case
Surveillance Definitions
Linking HIV Clinical Staging, ART Use, and HIV Case
Surveillance
Section 4.2 Exercises
Section 4.3: Components of an HIV Case Surveillance System
Introduction to an HIV Case Surveillance System
Defining Reportable Events
Case Finding
Case Report Form
Unit 4 Summary
Unit 4 Case Study
Annex 4.1. WHO clinical staging of HIV/AIDS for adults and
adolescents with confirmed HIV infection
Annex 4.2. Revised WHO clinical staging of HIV/AIDS for
infants and children with confirmed HIV Infection
Annex 4.3. Presumptive and definitive criteria for recognising
HIV/AIDS-related clinical events in HIV-infected adults and
adolescents (older than 15 years)
Annex 4.4. Presumptive and definitive criteria for recognising
HIV/AIDS-related clinical events in HIV-infected children
Unit 5, Monitoring Surveillance System Quality
Overview
Introduction
What Surveillance Systems Describe
Evaluating Surveillance Systems
Evaluation Process
Data Flow in the Caribbean Region
Measuring Completeness
Measuring Timeliness
Measuring Validity
Planning for Future Evaluations
Summary
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HIV/STI Surveillance for CAREC Member Countries
Table of Contents, continued
Unit 5 Exercises
Unit 6, Surveillance for Sexually Transmitted Infections (other
than HIV)
Section 6.1: Overview of STI Surveillance
Introduction
STI Surveillance and HIV Epidemic State
STI Aetiologies versus STI Syndromes
Symptomatic and Asymptomatic STIs
Case Definitions
Components of STI Surveillance Systems
Levels of STI Surveillance - Basic, Intermediate and
Advanced
Components of STI Surveillance Systems – In Detail
Universal STI Reporting
Prevalence Assessment and Monitoring
Assessing STI Syndrome Aetiologies
Behavioural and Biological Surveillance Surveys
Monitoring of Anti-Microbial Resistance of STI Pathogens
Section 6.2: Case Reporting, Data Management and Analysis
Planning Your Data Collection
Collecting Data
Entering and Analysing Data
Summary
Annex 6.1. Caribbean Epidemiology Centre Quarterly STI
Reporting Form
Annex 6.2. CAREC Surveillance Case Definitions for Sexually
Transmitted Infections (STIs)
Definition of STI, by Syndromes
Definitions of STI, by Aetiology
Unit 7, Confidentiality and Data Security
Overview
Introduction
Addressing Ethical Issues
Unique Identifiers—Name versus Codes: Balancing Risks and
Benefits
Confidentiality
Guidelines for Confidentiality and Data Security
Guiding Principles
Policies
Responsibilities
Training
Physical Security
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HIV/STI Surveillance for CAREC Member Countries
Table of Contents, continued
Data Security
Data Movement
Access Control
Summary
Unit 7 Exercises
Annex 7.1. Additional Laptop Security Considerations
Annex 7.2. Additional Security and Policy Considerations
Annex 7.3. Sample Employee Confidentiality Agreement/Oath
Annex 7.4. Attachment G: Using Surveillance Data to
Document Need and Initiate Referrals
Unit 8, Analysis, Interpretation, and Dissemination of HIV
Surveillance Data
Overview
Introduction
Communicating HIV Data
Formats for Disseminating HIV Data
Types of Analyses
HIV Surveillance Report
Annual HIV Epidemiologic Profile
Recommended Analyses
Programme Monitoring Data
Unit 8 Exercises
Appendix A, References
Appendix B, Abbreviations and Glossary
Appendix C, Useful Links
Appendix D, Answers to Warm-Up Questions and Case Studies
Appendix E, Action Plan for Strengthening Surveillance in
Caribbean Countries
Appendix F, Regional Surveillance Indicators and Data
Appendix G, Regional Reporting Requirements HIV/AIDS and
STI
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HIV/STI Surveillance for CAREC Member Countries
7
HIV/STI Surveillance for CAREC Member Countries
Unit 1
The Global HIV/AIDS Situation and the HIV/AIDS Epidemic in the
Caribbean
Overview
What this
unit is about
This unit gives an overview of the global situation with regard to the HIV
epidemic, and highlights the effects of the epidemic on the Caribbean. We
will mostly consider recent data from UNAIDS and CAREC.
Warm-up
questions
1. True or false? Almost 40 million people worldwide are infected with
HIV.
True
False
2. What region of the world has been most affected by HIV/AIDS, with
an infection prevalence of over 30% in some countries?
3. Which region of the world has the second-highest HIV prevalence?
4. What region in the Caribbean has been most affected by HIV/AIDS?
5. The major factor that accounts for the prevalence rates of HIV/AIDS
in the Caribbean is:
a.
b.
c.
d.
e.
injection drug use
women’s status and inability to influence partners’ behaviour
heterosexual transmission
blood exposure from unsafe medical practises
all of the above
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HIV/STI Surveillance for CAREC Member Countries
Introduction
What you
will learn
By the end of this unit, you should:


have an understanding of the overall HIV/AIDS situation in the world
be able to describe the main features of the HIV/AIDS situation in the
Caribbean.
Worldwide Epidemic
The HIV epidemic continues to grow worldwide. UNAIDS estimated that
38.6 million [33.4 million-46.0 million] people worldwide were living
with HIV at the end of 2005. An estimated 4.1 million [3.4 million–6.2
million] became newly infected with HIV and an estimated
2.8 million [2.4 million-3.3 million] lost their lives to AIDS. Overall, the
HIV incidence rate (the proportion of people who have become infected
with HIV) is believed to have peaked in the late 1990s and to have
stabilised subsequently, despite increasing incidence in several countries.
Figure 1.1. The global HIV epidemic, 1990-2005.
Discussing
the graph
You can see from Figure 1.1 above that global HIV prevalence (the
proportion of people living with HIV) appears to be levelling off;
however, the numbers of people living with HIV have continued to rise.
1. What could be the causes of each phenomenon?
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HIV/STI Surveillance for CAREC Member Countries
Factors that affect
HIV prevalence
Worldwide, a variety of factors account for the prevalence of HIV,
including the following:










high prevalence of other sexually transmitted infections (STIs)
increases the risk of acquiring and transmitting HIV
limited access to STI management
limited access to, or social non-acceptance of, condoms
war and civil disturbance
cultural/ethnic practises, such as polygamy and wife inheritance
women’s low status and inability to influence their partners’ behaviour
low literacy rates
increasing urbanisation, migration, mobilisation and separation of
families as a result of poverty and/or other social circumstances
low level of political commitment to the prevention and control of
HIV/AIDS
exposure to blood from unsafe medical practises and/or traditional
practises.
Africa
Africa remains the global epicentre of the AIDS pandemic. South Africa’s
AIDS epidemic—one of the worst in the world—shows no evidence of a
decline. An estimated 5.5 million [4.9 million–6.1 million] people were
living with HIV in 2005. An estimated 18.8% [16.8%–20.7%] of adults
(15–49 years) were living with HIV in 2005. Almost one in three pregnant
women attending public antenatal clinics were living with HIV in 2004,
and trends over time show a gradual increase in HIV prevalence.
There are no clear signs of declining HIV prevalence elsewhere in
southern Africa. In Swaziland, national adult HIV prevalence is estimated
at 33.4% [21.2%–45.3%]. Botswana’s epidemic is equally serious, with
national adult HIV prevalence estimated at 24.1% [23.0%–32.0%] in
2005. Lesotho’s epidemic seems to be relatively stable at very high levels,
with an estimated national adult HIV prevalence of 23.2% [21.9%–
24.7%].
In many areas of West Africa, rates are between 5%-10%. The numbers
for East and Central Africa are between these two. Among the notable
new trends are the recent declines in national HIV prevalence in two subSaharan African countries (Kenya and Zimbabwe), and urban areas of
Burkina Faso, alongside indications of significant behavioural change—
including increased condom use, fewer partners and delayed sexual debut.
Except for Sudan, national adult HIV prevalence in the countries of the
Middle East and North Africa is very low, and does not exceed 0.1%.
10
HIV/STI Surveillance for CAREC Member Countries
Africa, continued
However, available data suggest that the epidemics are growing in several
countriesincluding Algeria, Islamic Republic of Iran, Libyan Arab
Jamahiriya and Morocco. Across the region, an estimated 64 000 [38 000–
210 000] people were newly infected with HIV in 2005, bringing the total
number of people living with the virus to some 440 000 [250 000–720
000]. Sudan accounts for fully 350 000 [170 000–580 000] of those
people.
Figure 1.2. HIV prevalence among adults in Africa, 1990 and 2005.
Source: UNAIDS, 2006.
Figure 1.3. HIV epidemic in sub-Saharan Africa, 1985 – 2005.
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HIV/STI Surveillance for CAREC Member Countries
Eastern Europe
and Asia
Latest estimates show some 8.3 million [5.7 million–12.5 million] people
(2.4 million among adult women [1.5 million–3.8 million]) were living
with HIV in Asia at the end of 2005—more than two-thirds of them in one
country, India. Approximately 650 000 [390 000–1.1 million] people in
China were living with HIV in 2005. Injecting drug users (of whom there
are at least one million registered in the country) account for almost half
(44%) the people living with HIV. The overlapping risks of injecting drug
use and unprotected sex feature in several other epidemics in Asia.
The HIV epidemics remain relatively limited in Bangladesh, the
Philippines, Indonesia and Pakistan, although each of these countries risks
a more serious epidemic if prevention methods are not improved. An
especially troubling situation has emerged in the easternmost province of
Papua, which borders on Papua New Guinea, where a serious HIV
epidemic is underway.
The epidemics in Eastern Europe and central Asia continue to expand.
Some 220 000 [150 000–650 000] people were newly infected with HIV
in 2005, bringing to about 1.5 million [1.0 million–2.3 million] the
number of people living with HIV—a twenty-fold increase in less than a
decade. The epidemic’s death toll is rising sharply, too. AIDS killed an
estimated 53 000 [36 000–75 000] adults and children in 2005—almost
twice as many as in 2003. Increasingly large numbers of women are being
infected with HIV.
The majority of people living with HIV in Eastern Europe and central Asia
are in two countries: the Ukraine, where the annual number of new HIV
diagnoses keeps rising, and the Russian Federation, which has the biggest
AIDS epidemic in all of Europe.
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Latin America
In Latin America, some 140 000 [100 000–420 000] people were newly
infected with HIV in 2005, bringing the number of people living with the
virus to 1.6 million [1.2 million–2.4 million] The region’s biggest
epidemics are in the countries with the largest populations, notably Brazil,
which is home to more than one-third of the people living with HIV in
Latin America. The most intense epidemics, however, are underway in the
smaller countries of Belize and Honduras, in each of which more than
1.5% or more of adults were living with HIV in 2005.
Oceania
While HIV infection levels remain low across Oceania, Australia’s longestablished AIDS epidemic is not dissipating, and Papua New Guinea’s
relatively young but already serious epidemic accounts for more than 90%
of all HIV infections reported in Oceania to date outside of Australia and
New Zealand.
The Caribbean
The Caribbean’s epidemics—and the response of each country to the
AIDS epidemic—vary considerably in extent and intensity. HIV infection
levels have decreased in urban parts of Haiti and in the Bahamas, and have
remained stable in neighbouring Dominican Republic and Barbados.
Expanded access to antiretroviral treatment in the Bahamas and Barbados
appears to be reducing AIDS deaths, as well. However, such progress has
not been enough to undo the Caribbean’s status as the second-mostaffected region in the world. AIDS is the leading cause of death among
adults (15–44 years) and claimed an estimated 27 000 [18 000–37 000]
lives in 2005. (UNAIDS, 2006) Overall, fewer than one in four (23%)
persons in need of antiretroviral therapy was receiving it in 2005. National
adult HIV prevalence exceeds 2% in Trinidad and Tobago, and 3% in the
Bahamas and Haiti.
As the epidemic has spread throughout the Caribbean, the primary mode
of sexual transmission has changed from being predominantly homosexual
to a mosaic of homosexual, bisexual and heterosexual epidemics. Injecting
drug use is responsible for a minority of HIV infections and contributes
significantly to the spread of HIV only in Bermuda. The epidemic is also
shifting to younger populations—in particular, to young females. Among
the 12 territories with a generalised epidemic in the Caribbean, 10 of them
are CAREC Member Countries (CMCs). The remaining two countries,
Haiti and the Dominican Republic, share the Hispaniola Island, which is
the epicentre of the HIV epidemic in the Americas (CSR Supplement,
2003).
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Trends (CAREC Surveillance data, 1982–2003)
Data used for this report are based on quarterly reports or year-end
summaries submitted by nineteen CMCs. No reports were received from
Aruba; combined HIV/AIDS data were received from the Netherlands
Antilles. As data for 2004 and 2005 are only available for a small number
of countries, this review covers the period from 1982 to 2003.
During the period from1982 to 2003, a cumulative total of 25 854 AIDS
cases were reported to CAREC by 19 of its 21 CMCs. The distribution of
cases among CMCs was as follows: Jamaica - 31%, Bahamas - 17%,
Trinidad and Tobago - 20%, Guyana - 11%, Barbados - 7%, Suriname 7%, St. Vincent and the Grenadines - 2%, and Bermuda - 2%. The
remaining CMCs (except Aruba and the Netherlands Antilles) individually
reported less than one percent of the total.
The first case of AIDS in the CMCs was recorded in Jamaica in 1982, and
the general trend since then has been an increasing one, from 669 cases in
1990 to 2 638 cases in 2003 [as shown in Figure 1.3]. Incomplete reports
from some relatively large countries (for example, Barbados, Belize and
Suriname) were mainly responsible for the decrease in 2000-2002.
The rate of the spread of HIV (and subsequently AIDS) shows a variety of
trends in the different member countries. This is the result of a number of
factors, including the stage of the epidemic in each country, the primary
mode(s) of transmission, the strength of the HIV/AIDS control programme
and the availability of antiretroviral drugs. In Jamaica, the trend has been a
steadily increasing one, from one case in 1982 to 70 cases in 1990, to a
high of 1070 cases in 2003. Trinidad and Tobago and the Bahamas, which
reported higher numbers than Jamaica in 1990-1993, have shown a slower
rate of increase, with indications of a plateau in 1996/97 and subsequent
declines. Antigua and Barbuda, Dominca, Grenada and St. Lucia have all
reported fewer than 20 cases per year, while Anguilla, Montserrat, the
British Virgin Islands, the Cayman Islands and St. Kitts and Nevis have
individually reported fewer than 10 cases per year.
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HIV/STI Surveillance for CAREC Member Countries
Trends (CAREC Surveillance data, 1982 – 2003), continued
Reported (Confirmed) Cases of AIDS by Year
Figure 1.3. Reported
of AIDS by year, CAREC member
Countries
CAREC Membercases
All(confirmed)
1982 - 2005 1982-2005.
countries,
3000
incomplete reporting
2000
1500
1000
500
20
05
20
04
20
03
20
02
20
01
20
00
19
99
19
98
19
97
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96
19
95
19
94
19
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19
92
19
91
19
90
19
89
19
88
19
87
19
86
19
85
19
84
19
83
0
19
82
No. of Reported Cases
2500
Year
During the period under review, the HIV/AIDS epidemic in the Caribbean
changed from occurring mostly in males, to a male-to-female ratio of 1:1.4
in 2003. In the year 1985, out of 138 total AIDS cases reported by CMCs,
28 (20%) were in females. In the year 1990, out of 669 total AIDS cases
reported by CMCs, 211 (32%) were in females. As shown in Figure 1.4,
on the next page, in 2003, of 2 638 total reported AIDS cases, 1 102 (42%)
were in females.
15
HIV/STI Surveillance for CAREC Member Countries
Trends (CAREC Surveillance data, 1982 – 2003), continued
Figure 1.4. Reported AIDS cases in the Caribbean region, 1982-2003.
Source: AIDS reports from CMCs, accessed from the CAREC Reporting Tool
for AIDS at: http://carec.net/index.html on 11th May 2006
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Trends (CAREC Surveillance data, 1982 – 2003), continued
Table 1.1 shows the age distribution of reported AIDS cases for the years
1985, 1990, 1995, 2000 and 2003. The 20-49 year age group is the most
affected, accounting for over 65% of cases annually.
Table 1.1: Reported AIDS cases by age group in 1985, 1990, 1995, 2000
and 2003.
Age (years)
1985
1990
1995
2000
2003
≤1
1-4
5-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
≥ 50
Unknown
Total
8
9
1
3
14
28
27
16
8
1
10
11
136
21
14
6
13
74
110
120
87
57
46
64
57
669
33
36
14
21
128
234
312
256
192
129
201
24
1580
32
106
38
29
128
279
309
338
245
220
284
222
2230
20
56
34
30
150
290
404
383
321
234
366
350
2638
Source: AIDS reports from CMCs, accessed from the CAREC Reporting Tool
for AIDS at: http://carec.net/index.html on 11th May 2006.
Although heterosexual transmission of HIV has been steadily increasing
over the years and is the major mode of transmission, other routes, like
MSM (men having sex with men) and MTCT (mother-to-child
transmission) have also been consistently responsible for a significant
number of AIDS cases. However, unlike in some other parts of the world
(like North America and Europe), HIV transmission due to intravenous
drug use is not responsible for a large number of AIDS cases in the CMCs.
While there is under-reporting, there is cautious optimism that the AIDS
epidemic in some CMCs has reached or is reaching a plateau.
For more detailed AIDS data, please visit CAREC Reporting Tool for
AIDS at: http://carec.net/index.html
Summary
HIV/AIDS has become a major developmental problem, affecting every
country world-wide and the Caribbean region in particular, where the
epidemic is second in magnitude only to that in sub-Saharan Africa. It
should, however, be noted that there are substantial differences in the
extent and intensity of the epidemic in individual countries in the
Caribbean.
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Unit 1 Exercises
Warm-up
review
Take a few minutes now to look back at your answers to the warm-up
questions at the beginning of the unit. Make any changes you want to.
Small group
discussion
Get into small groups by country, region or district to discuss these
questions.
1. Which regions or districts are most affected by the HIV/AIDS
epidemic in your country?
2. What might be the factors contributing to the high rate of HIV in these
provinces or districts?
Apply what
you’ve learned/
case study
Try this case study. We’ll discuss the answers in class.
Cariba is a Caribbean nation that had its earliest cases of AIDS recognised
in 1982. Data below are based on estimates of HIV prevalence by parish.
HIV prevalence (%) by parish, Cariba, 1995-2002.
Parish
St. Mary
Kingstown
Arima
St. James
Yotown
1995
1998
.2
0.5
1.0
1.1
0.4
2000
0.5
0.7
2.0
5.6
0.9
2002
1.0
0.9
2.7
2.0
1.3
a. What parish has historically had the greatest proportion of its
population infected with HIV?
b. What are prominent recent trends?
c. In 2002, which parish had the highest prevalence? Is the epidemic
increasing or decreasing in this parish?
18
1.1
1.0
2.9
2.8
1.2
HIV/STI Surveillance for CAREC Member Countries
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HIV/STI Surveillance for CAREC Member Countries
Unit 2
Biology, Transmission, Natural History, Prevention and
Treatment of HIV Infection and AIDS
Overview
What this unit
is about
Extensive research has shown that HIV is the virus that causes AIDS. This
unit discusses HIV types and the prevention and treatment of HIV
infection and AIDS.
Warm-up
questions
1. Which body cells does HIV infect?
a. respiratory cells
b. skin cells
c. red blood cells
d. white blood cells
2. How many major strains of HIV exist?
3. Which of the following is not a method of HIV transmission?
b. sexual intercourse
c. casual physical contact
d. blood exchange
e. mother to foetus transmission
4. What type of infectious agent is HIV?
a. bacterium
b. virus
c. prion
d. none of the above
5. True or false? HIV infection and the onset of AIDS occur
simultaneously.
True
False
6. Which region of the world has the greatest diversity of HIV sub-types,
making the development of one unique treatment or vaccine difficult?
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Warm-up questions, continued
7. Which of the following is associated with increased risk of sexual
transmission of HIV?
a. failure to use a male or female condom
b. a greater number of sexual partners
c. a high viral load in an infected partner
d. all of the above
8. True or false? The presence of existing sexually transmitted infections
(STIs) increases the risk of acquiring HIV during sexual intercourse.
True
False
9. List the three main types of antiretroviral drugs used to treat HIV
infection.
a.
b.
c.
10. Which of the following fatal opportunistic infections commonly
occur(s) in AIDS patients?
a. herpes zoster
b. fungal infections
c. tuberculosis (TB)
d. all of the above
11. True or false? A vaccine for the prevention of HIV infection is
currently available.
True
False
12. True or false? Some STIs, such as chlamydia, are biologically more
easily acquired by young women, making them more susceptible to
HIV infection.
True
False
13. _____________ is the term used to describe the treatment to prevent
or suppress infection.
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Introduction
What you
will learn
By the end of this unit you should be able to:
 explain the basic biology of HIV
 describe HIV transmission routes
 understand the importance of concurrent STIs in increasing risk of
HIV transmission
 discuss the natural history of HIV and list the major opportunistic
infections that occur among AIDS patients
 describe the major elements of HIV prevention and control
programmes
 recognise that HIV is treated with antiretroviral drugs and that
treatment involves prevention and treatment of opportunistic
infections.
Biology of HIV
The virus
Since AIDS was first recognised in 1981, extensive research has shown
that HIV is the virus that causes AIDS. HIV is a retrovirus, a family of
viruses that carry their genetic information on a single strand of RNA.
HIV infects a number of different cells in the body. Most important are
two classes of white blood cells that are involved with protecting the body
against infection:


CD4+ lymphocytes
macrophages
As the number of these cells is depleted because of viral destruction,
patients become immunodeficient, meaning their immune systems are
insufficient to ward off infections. They develop opportunistic infections
and certain cancers, which may be infectious in origin. Opportunistic
infections are illnesses that usually do not occur in persons with healthy
immune systems.
HIV types
The epidemiology of HIV sub-type distribution and their evolution
worldwide are critical for several reasons, including:


for vaccine development
to trace transmission among individuals and track the spread of the
virus through countries.
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HIV types, continued
Two major types of HIV have been recognised: HIV-1 and HIV-2. Table
2.1 summarises the differences between the two types:
Table 2.1. Characteristics of HIV-1 and HIV-2.
HIV-1
HIV-2
Primarily confined to West
Geographic Worldwide
Africa, although cases have
distribution
been reported in Europe, Asia,
and Latin America
Subtypes
Major group, M, is
classified into 10 subtypes; additional highly
divergent strains are
known as group O
Five genetic sub-types
Natural
history
More easily transmitted,
and faster progression to
AIDS
Less easily transmitted than
HIV-1, and slower
progression to AIDS
Discussing
the table
a. Which type is more widespread, HIV-1 or HIV-2?
b. Which type of HIV is transmitted more easily, HIV-1 or HIV-2?
c. Which type of HIV progresses more quickly to AIDS?
Differences in
distribution
At present, specific sub-types are found more frequently in certain
countries or regions of the world. Because people move within and
between countries, it is likely that multiple sub-types of HIV-1 will appear
in most countries.



Sub-types A, C and D of HIV-1 are most frequently found in subSaharan African countries, but all sub-types along with group O strains
have been identified.
The greatest diversity of HIV strains has been found in sub-Saharan
Africa, which has also been the region most severely affected by the
epidemic.
HIV-1 is the prevalent strain in the Caribbean.
23
HIV/STI Surveillance for CAREC Member Countries
HIV Transmission and Natural History
How HIV is
transmitted
Both HIV-1 and HIV-2 are transmitted in the same ways. Figure 2.1
details the primary methods of HIV transmission in the Caribbean.

The predominant route of transmission in countries with generalised
epidemics (that is, an epidemic where HIV is firmly established in the
general population) is through unprotected heterosexual intercourse or
homosexual intercourse between men. There are no documented cases
of sexual transmission between women. Sexual transmission accounts
for the majority of HIV transmission in the Caribbean.

HIV is also transmitted through blood, blood products and donated
organs or semen. Blood-borne transmission, also known as parenteral
transmission, occurs primarily through the use of inadequately
sterilised needles, syringes or other skin-piercing instruments and
through the transfusion of infected blood.

HIV may be transmitted from an infected mother to her foetus or
infant during pregnancy, delivery or when breastfeeding.
Figure 2.1. Category of transmission in reported AIDS cases in CMCs,
1982-2002.
Source: Status and Trends: Analysis of the Caribbean HIV/AIDS Epidemic, 1982-2002.
CAREC/PAHO 2004
Discussing
the figure
Look at Figure 2.1 and answer the following questions.
a. What is the most common mode of transmission in the Caribbean?
b. Which type accounts for 11% of HIV transmission in the Caribbean?
24
HIV/STI Surveillance for CAREC Member Countries
How HIV is
transmitted
Figure 2.2 shows the HIV infection process.




HIV infection begins when specific attachment proteins on the
envelope of the HIV virus (known as glycoprotein (gp) 120 and gp
160) bind to CD4 receptors located on the cell membranes of human
T-helper lymphocytes and macrophages (two types of white blood
cells) and a few other types of cells.
This binding reaction allows HIV to fuse with the T-helper
lymphocyte or macrophage.
The HIV genetic material is reverse-transcribed and integrates with
the cell’s DNA. Reverse-transcription is the process by which HIV’s
genetic material (RNA) is transformed into DNA, which allows it to
fuse with the host’s genetic material (DNA).
The cell produces the components of new HIV viruses, which are then
released to infect additional cells.
Figure 2.2. HIV infection process of a T-helper lymphocyte.
25
HIV/STI Surveillance for CAREC Member Countries
Discussing
the figure
Look at Figure 2.2, on the previous page, and answer the following
questions:
a. What process enables the HIV virus to enter the T-lymphocyte?
b. Where are the new HIV components produced?
Factors
affecting HIV
transmission
HIV transmission depends on a variety of biological, behavioural and
epidemiological factors. Together these factors are usually referred to as
infectivity. Infectivity refers to the probability of an organism being
transmitted from an infected person to an uninfected person. We will
consider these two essential questions:

What are the inter-relationships between HIV and STIs?

What risk factors determine whether an STI or HIV will be transmitted
through a sexual exposure?
STI and HIV
interrelationship
Over the course of the HIV epidemic, we have begun to understand the
complex inter-relationships between STIs and sexually transmitted HIV.
Behavioural factors – Both STIs and HIV can be sexually transmitted by
vaginal, anal and oral intercourse. The risk of HIV transmission is
generally greatest for anal intercourse and least for oral intercourse.
Epidemiological factors – Populations with high rates of STIs have high
rates of sexually transmitted HIV.
Host factors – The presence of STIs causes local immunologic changes in
the mucous membranes of the genital track, and, in the case of genital
ulcers, cause tears in the protective layer of skin. These changes make it
easier to acquire and transmit HIV.
26
HIV/STI Surveillance for CAREC Member Countries
Risk factors
for HIV
infection
The three primary biological factors that influence the transmission and
acquisition of HIV infection are:

the amount of virus to which an uninfected person is exposed

the type/duration of exposure

host factors that protect uninfected persons against infection.
1. Amount of virus
Definition: Viral load refers to the amount of virus present in blood,
semen, cervicovaginal fluids and amniotic fluid of the infected person.
The amount of virus is higher in some body fluids than in others. When a
person is exposed to fluids with a high viral load, he or she has a higher
risk of being infected than if exposed to fluids with a lower viral load. In
general, viral load is higher in blood and genital fluids than in oral fluids.

Viral load in blood can be measured with an HIV viral-load blood test.

Higher viral loads in the blood generally correspond to higher viral
loads in genital fluids (semen and vaginal secretions).

The viral load varies during the clinical course of disease. It is highest
in the early and late stages of disease.

Effective treatment with antiretroviral therapy (that is, drugs used to
fight HIV infection) lowers the viral load in blood and may lower it in
genital fluids.
27
HIV/STI Surveillance for CAREC Member Countries
Risk factors for HIV infection, continued
2. Type and duration of exposure
The type and duration of exposure affects the risk of HIV transmission.
Consider these factors:

Direct exposure to HIV-infected blood (for example, through blood
transfusions) carries a greater chance of transmission than exposure to
an infected person’s semen or vaginal secretions.

Sexual exposure risk is increased with the following:
o the presence of white blood cells and inflammation
o the duration of exposure.

The risk of acquiring HIV is proportional to a person’s risk of being
exposed sexually to HIV. This means that a person’s risk of HIV is
determined primarily by the risk of having an infected partner.

Persons whose primary sexual partner is infected have the greatest
probability of infection through repeated sexual exposure to this
primary partner.

The risk of acquiring HIV infection increases with the number of
exposures to an infected person. An uninfected person repeatedly
exposed to an infected person is at greater risk, over time, of being
infected, than someone exposed only once. For example, an infected
wife’s uninfected husband is at greater risk if he has sex with her 100
times over a year than if he has sex with an infected sex worker one
time during that year.

Among persons with multiple sexual partners, the greater the number
of partners an individual has, the greater his or her likelihood of
having intercourse with someone with HIV infection.

Anal intercourse carries a higher risk of infection than vaginal
intercourse, and vaginal intercourse is substantially riskier than oral
intercourse.

Uncircumcised men have a higher risk of acquiring HIV infection than
circumcised men because:
o infected vaginal fluids are held in contact with mucosal surfaces
under the uncircumcised foreskin longer
o the foreskin often contains large numbers of white blood cells that
HIV can infect.
28
HIV/STI Surveillance for CAREC Member Countries
Risk factors for HIV infection, continued
3. Host factors
Host factors also affect the risk of infection.
Genetic/immunologic:
 The risk of transmission from an infected man to an uninfected woman
during intercourse may be slightly higher than the risk of transmission
from an infected woman to an uninfected man. Factors that may contribute
to a higher risk of transmission from a man to a woman include the
following:
o STIs and HIV in semen can remain viable for up to 72 hours
following ejaculation.
o In contrast, very small amounts of cervico-vaginal fluids are
introduced into the male partner’s urethra during sex. Thus, the
male is only exposed during the act of intercourse, an average of
20 minutes.
o The cervix and the opening of the cervical canal have greater
surface area than the male urethra.
 Persons with genetic mutations for the HIV co-receptor are less
susceptible to HIV infection.
Presence of STIs:
 The co-existence of inflammatory (such as gonorrhoea or chlamydia)
or ulcerative (such as syphilis, chancroid or herpes simplex type 2)
sexually transmitted infections (STIs) increases the risk for acquiring HIV
infection.
29
HIV/STI Surveillance for CAREC Member Countries
How STIs increase
HIV risk
The process by which STIs increase the risk of transmitting and acquiring
HIV infection is described below and shown in Figure 2.3:

STIs destroy cells in the epithelium at the site of infection in the
genital tract (for instance, the urethra in men or the cervix in women).

This partially or completely exposes the sub-mucosal layer of the
mucous membrane and forms ulcerations. The ulcerations can be seen
on examination of the patient or can be detected microscopically.

The ulceration results in an inflammatory immune response. The
immune system cells that come in response to the infection include,
among others, cells that HIV can target. These cells are:
o T-helper lymphocytes
o macrophages.
These cells contain CD4 receptors and are present in the sub-mucosa
and on the surface of the mucous membranes.
Figure 2.3. How STIs increase the risk of HIV transmission.
Discussing
the figure
Look at Figure 2.3, and answer the following questions:
a. How do STIs increase the risk of HIV transmission?
b. What does HIV do once it has entered the sub-mucosal membrane?
30
HIV/STI Surveillance for CAREC Member Countries
STIs increase risk
of acquiring and
transmitting HIV
As shown in Table 2.2, STIs affect both HIV-infected and HIV-uninfected
persons.
Table 2.2. The effect of STIs on HIV-infected and HIV-uninfected
patients.
HIV Status
Effect of STIs
Infected
Uninfected
 Increases the recruitment of HIV-infected cells, such
as T-helper lymphocytes and macrophages, to the
surface of the mucous membranes
 Increases the recruitment of cells that can be infected
by HIV, such as T-helper lymphocytes and
macrophages, to the surface of the mucous
membranes, thereby increasing susceptibility to HIV
transmission
 Destroys epithelial layer through ulceration and
exposes sub-mucosal tissues that contain target cells
(that is, cells that can be infected by HIV)
Discussing
the table
Looking at Table 2.2, discuss the following questions:
a. How would ulceration increase the risk of acquiring HIV?
b. What causes the recruitment of HIV target cells to the surface of
mucous membranes?
31
HIV/STI Surveillance for CAREC Member Countries
Can controlling
STIs decrease
HIV transmission?
Three large randomised controlled community trials have been conducted
in Africa. The purpose of the trials was to assess the impact of intensive
STI control and treatment programmes on HIV transmission.

In the Mwanza district of Tanzania, improved STI syndromic
management and public health programmes led to a decrease in HIV
transmission compared to usual care. This study was conducted when
the STI prevalence was high and the HIV prevalence was low but
increasing rapidly in Tanzania. Overall, HIV incidence was 42% lower
in communities that received improved STI services compared to those
that continued with the usual levels of STI services.

Two other STI control trials were conducted in Uganda, in areas of
high but stable or declining HIV incidence and moderate or lower STI
prevalence. These found different results from the trial in Tanzania.
o In the Rakai study, azithromycin, ciprofloxacin and metronidazole
were used to control STIs, but this did not lead to a decrease in
HIV transmission.
o In the Masaka trial, improved syndromic case management and
public health STI management also failed to decrease HIV
transmission.
Both of the Ugandan studies were conducted during the time of stable or
declining HIV transmission in Uganda.
Possible reasons
for discrepancy
Why did the study results not agree? The discrepancy is probably due to
the nature of the HIV epidemic in each area during the time when the STI
programme improvements were made. The difference may also be due to
the types and prevalence of STIs in those communities. For example, the
prevalence of genital ulcer disease was relatively low in Uganda at the
time of these trials. Still, some conclusions can be made:

Large-scale improvements in STI control programmes are likely to
have the greatest impact on HIV during the early phase of an HIV
epidemic in a given community or population. During this time period,
STI control programmes may lead to substantial reductions in new
HIV infections.
32
HIV/STI Surveillance for CAREC Member Countries
Possible reasons for discrepancy, continued

When HIV infection rates are stable or declining, STI control
programmes may be less effective in decreasing HIV transmission in a
community or population.
Treatment
implications
For clients of STI clinics, risk of transmitting and acquiring HIV infection
can be reduced if clinicians are trained to:




provide HIV behavioural risk-reduction counselling and testing to all
patients diagnosed with an STI
screen HIV-infected patients for STIs
treat both symptomatic and asymptomatic STIs
provide treatment to sexual partners.
Spectrum of Disease following HIV Infection
AIDS is the late stage of HIV infection. AIDS is characterised by a
severely weakened immune system that can no longer ward off lifethreatening infections and cancers. The risk for AIDS is related to the
length of HIV infection. Without antiretroviral therapy, the vast majority
of HIV-infected individuals will eventually develop AIDS.

Prior to antiretroviral therapy (ART; that is, drugs used to fight
infection by retroviruses), the average time from HIV infection to
onset of clinical AIDS in North American patients was 10 years.

The advent of effective ART has considerably reduced the rate of
progression to AIDS in areas where these drugs are accessible. It has
also been associated with changes in the types of opportunistic
infections that appear with AIDS. Overall, in the Caribbean, fewer
than one in four (23%) of the people in need of antiretroviral therapy
were receiving treatment in 2005.
Preventing Transmission of HIV/AIDS
Prevent sexual
transmission
The best long-term solution for controlling the HIV/AIDS epidemic is a
low-cost, highly effective vaccine, but one will not be available in the near
future. Therefore, the best options remain changes in behaviour and a
handful of prevention technologies.
33
HIV/STI Surveillance for CAREC Member Countries
Prevent sexual transmission, continued
The goal of prevention is to decrease the risk for HIV transmission from
infected to uninfected individuals. The basic approach to prevention
involves:
 decreasing the risk of being exposed by avoiding sexual intercourse
with an infected person
 decreasing the risk of transmission, if exposed.
Basic
approach
The most basic approach to prevention, other than abstinence, is to






delay age of sexual debut
decrease the numbers of sexual partners
consistently use male and female condoms
undergo voluntary testing and counselling to know your HIV status
identify and appropriately treat STIs
avoid blood-borne transmission.
Table 2.3. Avoiding blood-borne transmission of HIV.
Method of
How to prevent
transmission
Transfusion
 sterilising or not re-using needles
 screening blood and blood products for
HIV prior to administration
Re-use of needles and  sterilisation of surgical instruments
surgical instruments
(including those used in circumcision,
without sterilisation
tattooing and scarification)
 sterilising or not re-using needles
Needlestick injuries to  universal precautions for healthcare
healthcare workers
workers (for example, use of gloves and
eyewear, proper disposal of needles)
 post-exposure prophylaxis for healthcare
workers exposed (depending on level of
risk)
In some parts of the world, the principal means of parenteral transmission
has been the sharing of needles and syringes by illegal drug users.
Discussing
the table
Look at Table 2.3 to answer these questions:
a. List three ways that healthcare workers can protect themselves from
infection.
b. Is illegal drug injection a problem in your country?
34
HIV/STI Surveillance for CAREC Member Countries
Prevent
mother-to-child
transmission
Perinatal transmission is HIV transmission during pregnancy, childbirth
and breastfeeding. Study results vary, but in 1999 they suggested that the
rate of mother-to-child transmission of HIV is around 25 to 30% in the
Caribbean. (Sixty-six percent of that transmission occurs during
pregnancy and delivery and 34% through breastfeeding).
A short-course antiretroviral regimen given to the mother and the newborn
baby substantially reduces the risk of transmission. Cuba’s prevention of
mother-to-child transmission of HIV programme is among the most
effective in the world and has kept the total number of babies born with
HIV to date below 100.
HIV-infected mothers can avoid the risk of transmission through infected
breast milk by using breast-milk substitutes. However, significant health
risks are associated with this practise, including:


malnutrition
exposure to other infections.
WHO/UNICEF/UNAIDS have developed several documents that address
HIV and breastfeeding. A summary of their recommendations follows:

When replacement feeding is acceptable, feasible, affordable,
sustainable and safe, avoidance of all breastfeeding by HIV-infected
mothers is recommended. Otherwise, exclusive breastfeeding is
recommended during the first months of life.

All HIV-infected mothers should receive counselling about the risks
and benefits of various infant-feeding options. Whatever a mother
decides, she should be supported in her choice.

When HIV-infected mothers choose not to breastfeed from birth or
stop breastfeeding later, they should be provided with specific
guidance and support for at least the first two years of the child’s life
to ensure adequate replacement feeding.

Breastfeeding should be discontinued as soon as feasible. This is
known as “early weaning,” and it should take into account local
circumstances, nutritional considerations, the individual woman’s
situation and the risks associated with replacement feeding.
35
HIV/STI Surveillance for CAREC Member Countries
HIV/AIDS Treatment
Antiretroviral
drugs
Antiretroviral drugs are used to treat HIV infection. In the past, the high
cost of these drugs meant that they were rarely used in the Caribbean and
sub-Saharan Africa. Several agencies are now making funds available for
antiretroviral and other therapies. These organisations include the Global
Fund to Fight AIDS, Tuberculosis and Malaria, the World Bank Multisectoral AIDS Plan (MAP) and the United States President’s Emergency
Plan for HIV/AIDS Relief (PEPFAR).
There are three classes of first-line antiretroviral drugs:



nucleoside reverse transcriptase inhibitors (NRTIs)
non-nucleoside reverse transcriptase inhibitors (nNRTIs)
protease inhibitors (PIs).
The regimens recommended for use in the Caribbean include a
combination of three antiretroviral drugs. If available, tests for the level of
CD4+ cells and plasma viral load (a measure of how much HIV is
replicating in the body) can be used to make judgments about when to
begin therapy. Treatment will most likely start when patients develop
clinical symptoms from their immunodeficiency or reach a CD4+ cell
count of fewer than 350 cells per mm3.
Preventing
and treating
opportunistic
infections
In addition to antiretroviral drugs, the treatment of HIV infection includes
diagnosis, prophylaxis (treatment to prevent or suppress infection) and
treatment of selected opportunistic infections.

Anti-tuberculosis (TB) drugs extend the lives of patients with both
HIV and TB.

Cotrimoxazole prophylaxis has been used successfully to prevent the
onset of opportunistic infections in HIV-infected patients.

Vaccines are available for some potential opportunistic infections,
such as pneumococcal disease.
36
HIV/STI Surveillance for CAREC Member Countries
Preventing and treating opportunistic infections, continued
New prevention strategies are being explored. Some strategies that are
currently undergoing development/research trials include:






male circumcision
cervical barriers
pre-exposure prophylaxis with antiretroviral drugs
herpes suppression
microbicides
HIV vaccines.
The results of some of these studies could be available within the next two
years. Additionally, a wide range of promising HIV prevention approaches
are in late-stage clinical trials.
Male
circumcision
Researchers have long observed that countries with higher rates of male
circumcision have lower rates of HIV infection. In 2005, the first
randomised efficacy trial of male circumcision for HIV prevention,
conducted in South Africa, showed that circumcised men were 60% less
likely than uncircumcised men to become infected with HIV from female
partners.
Three additional efficacy trials of male circumcision are underway in
Kenya and Uganda to assess the applicability of the South African
findings in other settings and populations, and to determine if male
circumcision also reduces the risk of HIV transmission from men to their
female partners. Results are expected in 2007.
Cervical
barriers
Researchers hypothesise that cervical barriers such as diaphragms, which
are currently used for contraception, may help protect women from HIV
and other sexually transmitted diseases. An efficacy trial of the diaphragm
for HIV prevention is nearing completion in South Africa and Zimbabwe,
and results are expected in 2007.
Pre-exposure
prophylaxis with
antiretrovirals
Research in animals suggests that antiretroviral drugs used for HIV
treatment may also be effective in preventing infection in HIV-uninfected
adults, an approach called pre-exposure prophylaxis, or PrEP. Efficacy
trials of this approach are underway in Botswana, Peru and Thailand.
Results could be available as early as 2008.
37
HIV/STI Surveillance for CAREC Member Countries
Herpes
suppression
Herpes, which infects up to 70% of people in some parts of sub-Saharan
Africa, can triple the risk of HIV acquisition, as well as increasing the risk
of transmission to others. The inexpensive, off-patent drug acyclovir is
approved for herpes suppression, and two trials are being conducted in
Africa, Latin America and the U.S. to test the efficacy of suppressing
herpes to lower HIV risk. Results are expected in 2007 and 2008.
Microbicides
Microbicides are topical substances, such as gels or creams, that can be
applied to the vagina or rectum to reduce HIV transmission. In 2007, two
phase III studies of one candidate microbicide were stopped prematurely
because in one of the studies, there was a higher number of HIV infection
in the active group compared with the placebo group. Currently, there are
three other phase III microbicide studies underway; results from some of
these trials could be available by 2008. In addition, a number of secondgeneration microbicide candidates—which specifically target HIV or
molecules of the cells it infects—are in earlier stages of research, and
could complete clinical trials within 10 years.
HIV vaccines
The best long-term hope for HIV prevention is a vaccine, but developing
an effective vaccine has proven to be a highly complex scientific
challenge. Most experts predict that it could be 10 years or more before an
HIV vaccine candidate is shown to be effective. An effective vaccine will
likely need to stimulate two types of immune response, but most of the
vaccine candidates developed to date are designed to target only one arm
of the immune system. Currently, 30 HIV vaccine candidates are in
clinical trials, including two in advanced efficacy or proof-of-concept
trials.
Summary
HIV is a virus that can be transmitted sexually, parenterally or perinatally.
However, there are precautions to prevent each type of transmission,
including condom use, needle sterilisation and short-course antiretroviral
treatment during pregnancy. Treatment includes antiretroviral drugs and
the prevention and treatment of opportunistic infections.
38
HIV/STI Surveillance for CAREC Member Countries
Unit 2 Exercises
Warm-up
review
Take a few minutes now to look back at your answers to the warm-up
questions at the beginning of the unit. Make any changes you want.
Small group
discussion
Get into small groups by country, region or province to discuss these
questions.
1. What is the predominant type of HIV in your country, HIV-1 or HIV-2?
2. What are the risk factors associated with sexual transmission of HIV in
your country?
3. What are the most common opportunistic infections in your country?
4. What are the major HIV prevention programmes that are operating in
your country? Of those programmes, what proportion of the population
do they reach?
39
HIV/STI Surveillance for CAREC Member Countries
Apply what
you’ve learned/
case study
Try this case study. We will discuss the answers in class.
Cariba has experienced rapid expansion of the HIV epidemic. Prevention
programmes to date have focused primarily on prevention of mother-tochild transmission. Examine the data and answer the questions.
Incidence of various STIs over time, Cariba.
2000
Gonorrhoea*
Syphilis*
Reported cases
of urethritis
from STI clinic
HIV incidence
(estimated)
2001
2002
5.0
2.1
2 987
12.8
4.5
3 452
23.5
16.4
6 784
2.0%
4.3%
5.0%
* Cases per 1 000, population 15-49 years
a. Do you think that sexually transmitted infections (STIs) may be playing
an important role in the spread of HIV infection? Why?
b. Would an STI prevention programme be an important part of the
country’s HIV control efforts?
c. Given the HIV incidence in Cariba, what do you think will happen to
tuberculosis rates in the next several years, and why?
40
HIV/STI Surveillance for CAREC Member Countries
41
HIV/STI Surveillance for CAREC Member Countries
Unit 3
Overview of Public Health Surveillance
Overview
What this unit
is about
To achieve HIV prevention and control, HIV/AIDS control programmes
need information on infection trends and on demographic and behavioural
characteristics of the affected population in a geographic area. This
information is being collected through surveillance systems. This unit
discusses the techniques of public health surveillance.
Warm-up
questions
1. Which of the following terms indicates the number or proportion of
persons in a population who have a disease at a given point in time?
a)
b)
c)
d)
sensitivity
prevalence
negative predictive value
none of the above
2. True or false? One-time cross-sectional surveys are valid methods of
HIV surveillance.
True
False
3. Match the following terms with their definitions:
___ laboratory-based
reporting
a. surveillance system in which the
reports of cases come from clinical
laboratories as opposed to healthcare
practitioners or hospitals
b. clinical and laboratory characteristics
that a patient must have to be counted
as a case for surveillance purposes
___ case definition
4. Which of the following terms indicates the number of persons who
develop a disease within a specified time period?
a)
b)
c)
d)
specificity
positive predictive value
incidence
none of the above
42
HIV/STI Surveillance for CAREC Member Countries
Introduction
What you
will learn
By the end of this unit you should be able to:
 describe the components of a surveillance system
 define sentinel surveillance, laboratory-based surveillance, and case
definitions
 define incidence and prevalence.
What is
surveillance?
Surveillance is the systematic, regular collection of information on the
occurrence, distribution and trends of a specific infection, disease or other
health-related event. Surveillance must occur on an ongoing basis, with
sufficient accuracy and completeness for data analysis and dissemination
that can lead to effective prevention and control of that infection, disease
or health-related event.
Public Health Surveillance
Surveillance
events
Surveillance involves the following main components:



the systematic collection, analysis and evaluation of morbidity and
mortality reports and other relevant data
timely and regular distribution of information about the trends and
patterns of disease to those who need to know
use of the information for disease prevention and control measures.
An important part of the definition is that surveillance systems involve
ongoing collection and use of health data. In other words, one-time crosssectional surveys are not surveillance.
Information
loops
A surveillance system is an information loop or cycle that involves:



healthcare providers
public health agencies
the public.
43
HIV/STI Surveillance for CAREC Member Countries
Information loops, continued
The cycle begins when cases of disease occur. It is complete when
information about these cases is made available and used for prevention
and control of the disease. The analysed and interpreted data must be
communicated to the people and agencies that need to use them. Figure
3.1 shows the information loop.
Figure 3.1. The flow of surveillance data
Discussing
the figure
Refer to Figure 3.1 and think about how HIV surveillance is conducted in
your country. (You may also choose a different disease.)
For each block in the loop, write one or two events that might occur. On
the next page ‘Reporting’ has been done as an example.
44
HIV/STI Surveillance for CAREC Member Countries
Discussing the figure, continued
Reporting:
1. Laboratory reports laboratory result of Cryptococcus
neoformans to treating physician.
2. Notification form for patient with cryptococcal meningitis is
sent from hospital to health department.
Analysis and interpretation:
1.
2.
Dissemination/utilisation
1.
2.
Intervention
1.
2.
45
HIV/STI Surveillance for CAREC Member Countries
Surveillance Terms
Information from surveillance is used to make decisions about the best
ways to prevent and control the disease. The term ‘surveillance’ implies
information for action. We will review some basic surveillance terms.
Universal case reporting - A surveillance system in which all cases of a
disease are reported.
Sentinel surveillance - A surveillance system in which reports are obtained
from certain selected facilities or populations. Sentinel surveillance can
apply both to reports of cases of disease or to periodic surveys, such as
antenatal HIV surveys.
Laboratory-based reporting - A surveillance system in which the reports
of cases come from clinical laboratories instead of physicians, other
healthcare practitioners or hospitals.
Case definition - The clinical and laboratory characteristics that a patient
must have to be counted as a case for surveillance purposes.
Prevalence - The proportion of persons in a population who have a disease
or condition at a given point in time.
Incidence - The number of persons who develop a disease or condition
within a specified time period. Incidence is expressed as a rate with the
time period in the denominator.
Passive surveillance - A passive system refers to data generated without
solicitation, intervention or contact by the health agency carrying out the
surveillance. Other agencies initiate reporting. Example: normal disease
case reporting by health facilities.
Active surveillance - The organisation conducting surveillance initiates
procedures to obtain reports. Example: making telephone calls or visits to
health facilities to obtain information.
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HIV/STI Surveillance for CAREC Member Countries
Relationship
between
disease and
case definition
There is a relationship between disease and case definition. Look at table
3.1 and the four terms after it.
Table 3.1 Relationship between disease and case definition.
True disease
Present
Absent
Total
Case definition
Definition met
a
b
a+b
Definition not met
c
d
c+d
Total
a+c
b+d
N
Sensitivity – Referring to table 3.1 above, the ability of a case definition or
laboratory test to predict true disease (a/(a+c)).
Specificity - The ability of a case definition or laboratory test to predict
absence of true disease (d/(b+d)).
Positive predictive value - The proportion of persons meeting a case
definition and having a positive laboratory test who have true disease
(a/(a+b)).
Negative predictive value - The proportion of persons not meeting a case
definition, and having a negative laboratory test who do not have true
disease (d/(c+d)).
Discussing
the table
Examine the table and definitions above and answer the following
questions:
a. For a given case definition, a = 10, b = 10, c = 30 and d = 150.
Determine the specificity of this case definition.
b. Using these numbers, what is the negative predictive value of the case
definition? What does this figure represent?
47
HIV/STI Surveillance for CAREC Member Countries
Past Approaches to Communicable Disease Surveillance
Generally, limitations of communicable disease surveillance systems in
some Caribbean countries are as follows:

Duplication of effort: Vertical or categorical surveillance systems
established to report a single disease as a component of specific
disease intervention programmes. This results in duplication of effort
and resources.

Delay in reporting: Health workers fail to report index cases of
epidemic-prone diseases in a timely manner. This delay in reporting
the earliest suspected cases significantly slows identification of
outbreaks and impedes the effectiveness of response.

Inadequate data collection, analysis, use and dissemination. Collection,
analysis, utilisation and dissemination of surveillance data are
inadequate. Usually, surveillance data are passed from facilities
through to national level without adequate analysis. Feedback is also
generally inadequate.

Lack of integrated training. Little attention has been given to
combining surveillance training activities to increase efficiency. As a
result, each programme organises programme-specific training courses
(including surveillance) for the same health personnel.

Lack of evaluation. Inadequate attention has been given to the
evaluation of programmes using surveillance data. Many resources are
invested in interventions that are not adequately evaluated.

Lack of laboratory involvement and co-ordination. Involvement of
laboratories in the surveillance system is inadequate. Neither national
nor inter-country laboratory networks have been established to fulfil
important public health functions, including the confirmation of cases
and outbreaks when the specificity of clinical diagnosis is low.

Lack of supervision. Supervisory support, completeness and timeliness
of reporting are generally inadequate.
48
HIV/STI Surveillance for CAREC Member Countries
CAREC Regional Communicable Disease Surveillance System
In 2000-2001, CAREC and its member countries recognised that many
attributes of the system, such as timeliness, accuracy and usefulness,
needed to be improved. The need for revision of the regional
communicable disease surveillance system was further recognised as the
process of revision of the International Health Regulations (currently
taking place) progressed. In 2002, the CAREC Scientific Advisory
Committee (SAC)1 supported the desire of member countries and CAREC
to provide accurate and timely reports on health threats and diseases in the
region. Realising that this process will likely identify further areas for
rationalisation and improvement, SAC recommended that CAREC and
national programmes exchange information as needed on a country-bycountry basis. SAC also recommended that CAREC prepare to provide
additional training and capacity building both at the national level and
CAREC level to initiate agreed-upon changes.
In 1986, heads of government in English-speaking Caribbean countries
approved a CCH initiative, a mechanism for health development through
increasing collaboration and promoting technical cooperation among
countries in the Caribbean. Communicable diseases were identified as one
of the eight priority areas in this initiative. As such, effective
communicable disease surveillance is necessary in order to achieve the
goals of the CCH initiative and to monitor the CCH indicators in this area.
Most of CAREC’s member countries will soon be part of the CARICOM
Single Market and Economy (CSME), which will allow free movement of
CARICOM goods, services, people and capital throughout the Caribbean
community and facilitate more homogenous economic performance across
CARICOM member states. Effective communicable disease surveillance,
which promotes disease prevention and control, will support the
implementation of CSME.
1
SAC membership includes Ministers of Health from CAREC member countries and representatives from
PAHO, CARICOM, other regional health institutions, regional universities, London School of Hygiene and
Tropical Medicine, US CDC and Health Canada.
49
HIV/STI Surveillance for CAREC Member Countries
Major Changes in the Regional Communicable Disease
Surveillance System
1. Expansion of syndromic surveillance and discontinuation of reporting
of suspected cases of diseases
2. Weekly reporting of syndromes only, not specific diseases (with the
exception of diseases requiring immediate reporting under the existing
WHO regulations and regional protocols)
3. Four-weekly reporting of age- and sex-specific confirmed cases of
selected diseases
4. Quarterly, case-based reporting of TB
5. Systematic and standardised outbreak reporting
6. The identification of a minimum dataset for laboratory surveillance
and the expansion of laboratory surveillance
7. Enhanced regional feedback from CAREC
8. Harnessing advancements in ICT to enhance surveillance efforts
9. Promoting an integrated interdisciplinary approach to surveillance and
response
Legal Basis
All CAREC member countries are WHO member states and, as such, are
signatory to the International Health Regulations (currently under
revision), which will require all member states to report all potential
public health emergencies of international concern to WHO.
Regional surveillance is mandated under the multilateral agreement
between CAREC and its member countries and is implemented through
the annual meetings of Chief Medical Officers, Caribbean National
Epidemiologists, Laboratory Directors and Programme Managers, who
agree upon surveillance systems and contribute to revisions and
amendments. This supports the CCH initiative for the prevention and
control of communicable diseases. The multilateral agreement also
mandates that surveillance activities shall be co-ordinated with the
surveillance programmes of PAHO/WHO.
50
HIV/STI Surveillance for CAREC Member Countries
Legal Basis, continued
All member countries have legislation and/or regulations governing the
reporting of communicable diseases, which state the conditions that are
nationally reportable by law. However, legislation is outdated in many
countries and needs to be revised.
Strategic and Operational Plans
A national policy on communicable disease surveillance is critical for
guiding planning and implementation activities and supports the
sustainability of the system. At both the national and regional level, there
should be strategic and operational plans for communicable disease
surveillance. These plans must address all components of the system (as
indicated in Figure 3.2), namely:




surveillance structure—guides and regulates the system
surveillance quality—monitors quality of the system and indicates the
extent to which system objectives are being met
core functions—components of the system
support functions—essential for sustainability of the system.
Reporting Chain
In-country healthcare providers, such as health centres, hospitals,
laboratories and private physicians (as identified by each country) are
responsible for the transmission of communicable disease data to the
national level. In some countries, healthcare providers report data directly
to the national level. In others, they report to an intermediary
regional/district/parish level that reports to the national level.
At the national level, the office of the National Epidemiologist is
responsible for the transmission of data, information and public health
emergencies (as outlined in International Health Regulations) to CAREC.
The office of the National Epidemiologist, in collaboration with the
national surveillance and response team, is also responsible for the
dissemination of information within each country.
At the regional level, CAREC is responsible for the dissemination of data
and information to PAHO/WHO and other stakeholders and partners,
including member countries.
The conceptual framework of surveillance and response systems for
communicable diseases is presented in Figure 3.2 on the next page.
51
HIV/STI Surveillance for CAREC Member Countries
Reporting Chain, continued
Figure 3.2. Conceptual framework of surveillance and response systems.
• Policy
• Laws, legislation, regulations
• IHR compliance
• Surveillance strategy
• Data flow between levels
• Networking/partnership
Surveillance structure
• Case detection
• Registration
• Confirmation
• Reporting
• Data analysis/interpretation
• Epidemic preparedness
• Response and control
• Feedback
Core functions
Disease/Health Problem
for surveillance and response
Surveillance quality
• Timeliness
• Completeness
• Usefulness
• Sensitivity
• Specificity
• Simplicity
• Flexibility
• Acceptability
• Reliability
• Positive predictive value
• Representativeness
Support functions
• Standards and guidelines
• Training
• Supervision
• Communication
• Resources (including logistics)
• Coordination
52
HIV/STI Surveillance for CAREC Member Countries
Reporting Chain, continued
The reporting chain and feedback levels are outlined schematically in
figure 3.3.
Figure 3.3. Reporting and feedback levels.
In-country
healthcare
providers
In-country
regional
level
Data
Feedback
National level
Stakeholders
CAREC
Partners
Data Transfer
Data are transferred from the district/parish/regional level, as specified by
the country. Data are transferred from the national level to CAREC either
electronically or via fax, and CAREC disseminates data to PAHO/WHO
and other stakeholders and partners electronically. CAREC recommends
that countries should utilise appropriate ICT for data storage and transfer.
Analysis and Interpretation
At the national level, each country is responsible for data validation,
analysis and interpretation for its own country.
CAREC is responsible for conducting regional analyses and interpretation
of data received from the countries. CAREC is also responsible for
following up with countries to validate data and investigate unusual
reports and changing disease trends.
53
HIV/STI Surveillance for CAREC Member Countries
Dissemination of Information
At the national level, each country is responsible for the dissemination of
the following feedback within its own country and to other key
stakeholders:


feedback from communicable disease surveillance
HIV/AIDS/STI annual report.
At the national level, each country is also responsible for disseminating
relevant Health Alerts within its own country, and for contributing
information to Carisurvnet, a secure listserv that serves as an electronic
communication tool for member countries.
CAREC is responsible for producing and disseminating the following
regional feedback:





weekly updates on syndromes (including EPI) posted on the CAREC
website
CSR: quarterly reports on specific diseases, TB updates, outbreaks,
articles and regional news and announcements
CSR supplements: two annually with detailed reports on specific
issues
CAREC annual report, containing details of the work of the Centre for
the period, including a summary of outbreaks for the year and an
HIV/AIDS/STIs update
CAREC alerts: public health alerts and regional and international
information of interest, produced as necessary.
These documents are available on the CAREC website (www.carec.org).
Additionally, CAREC is responsible for exchanging data and information
with other regional and international networks, such as the WHO internetbased system for the global surveillance of dengue (DengueNet) and the
European Working Group for Legionella Infections (EWGLI).
CAREC is also responsible for maintaining Carisurvnet, the listserv for
member countries.
54
HIV/STI Surveillance for CAREC Member Countries
Use of Data and Information
Nationally, countries should use data and information for:





direct action for prevention and control (for example, therapy,
prophylaxis, outbreak control)
programme planning
priority setting and resource allocation
evaluation and monitoring
research.
Regionally, CAREC should use data and information for:




initiating appropriate activities (for example, outbreak investigations,
control activities, development of guidelines)
evaluation and monitoring
supporting the planning, monitoring and evaluation of CAREC’s five
regional communicable disease programmes, namely:
- EPI programme
- Special programme on STIs
- TB programme
- Leprosy programme
- Food-borne disease programme
research.
CAREC is also responsible for working with countries to appropriately
package information for different audiences, such as the media, politicians
and the general public, as well as for presentation in the scientific
literature.
55
HIV/STI Surveillance for CAREC Member Countries
Monitoring and Evaluation
WHO definitions of monitoring and evaluation are as follows:


Monitoring is the routine (continuous) tracking of the performance of
surveillance and response systems.
Evaluation is the periodic assessment of changes in targeted results
(objectives) that can be attributed to a surveillance and response
system.
National and regional communicable disease surveillance systems must be
routinely monitored using appropriate indicators. The regional
surveillance indicators and data are listed in Appendix F: Regional
Indicators. Laboratory indicators are listed in the CAREC Laboratory User
Manual and programme-specific indictors are listed in the respective
programme manuals. It is essential to monitor all components of the
system (as indicated in Figure 3.2), namely:




surveillance structure
surveillance quality (as per Unit 5, it is essential to monitor at least
timeliness and completeness)
core functions
support functions.
Routine system monitoring may require minor or major system
adjustments or indicate the need for an evaluation.
The regional communicable disease surveillance system should be
evaluated every three years by a group consisting of representatives from
CAREC, member countries and other appropriate stakeholders and/or
partners. This evaluation will include a review and rationalisation of the
syndromes and diseases under surveillance.
Each national communicable disease surveillance system should be
evaluated every six to seven years. CAREC is responsible for coordinating these evaluations and they should be conducted in collaboration
with countries and other relevant partners. All evaluations should aim to
describe the system and assess four major components: Surveillance
structure, core functions, support functions, and surveillance quality.
CAREC is responsible for the development of standard evaluation tools
and indicators for the region.
56
HIV/STI Surveillance for CAREC Member Countries
Summary
Surveillance is the collection of data relevant to public health, which can
be analysed to guide prevention and treatment programmes. Sentinel
surveillance involves the collection of more detailed data from a smaller
sample of sites, while laboratory-based reporting occurs when case reports
come from laboratories instead of health facilities. Prevalence is the
proportion or number of persons in a certain population who have a
particular disease, while incidence measures new infections during a
specific time period.
The Caribbean Epidemiology Centre (CAREC) maintains and provides
norms and forms for the reporting, monitoring and investigation of
diseases and outbreaks. Regular feedback and exchange of information is
facilitated by an internet-based, secure listserv (Carisurvnet), weekly
surveillance updates, quarterly CAREC Surveillance Reports (CSRs),
surveillance summaries and supplements and public health alerts. Training
in surveillance and outbreak investigation is used to develop national
capacity. Laboratory support for surveillance and response is provided in a
variety of ways, including early identification of changing disease trends
and outbreaks, the provision of reference testing services and
antimicrobial resistance monitoring. Within the limits of resources
available, the Centre sometimes provides information technology (IT)
support, such as training and computers.
CAREC conducts advocacy with national and regional policymakers on
the importance of surveillance and resources needed for it. Finally,
periodic evaluations of the quality of national surveillance systems are
conducted, and feedback and technical assistance are provided to aid
revision and strengthening.
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HIV/STI Surveillance for CAREC Member Countries
Annex 3.1. Syndromes and Communicable Diseases under
Regional Surveillance
Note: Due to the potential for international spread, conditions marked with ** are to be
reported both immediately and either weekly or monthly as indicated
IMMEDIATE NOTIFICATION
**Cholera **Plague **Yellow Fever (Urban or Sylvatic) **Severe Acute Respiratory Syndrome
**Outbreaks/Clusters/Unusual events
WEEKLY DATA COLLECTION
Syndromes (aggregate data):
Acute Flaccid Paralysis
Fever and haemorrhagic symptoms
Fever and neurological symptoms
Fever and respiratory symptoms (ARI) < 5 yrs
Fever and respiratory symptoms (ARI) ≥ 5 yrs
Fever and rash
Gastroenteritis < 5 year olds
Gastroenteritis ≥ 5 year olds
Undifferentiated fever <5
Undifferentiated fever ≥ 5 yrs
QUARTERLY DATA COLLECTION
(Age and sex specific):
HIV
AIDS
Urethral Discharge
Gonorrhoea
Chlamydia
Non-Specific Urethritis (NSU)
Genital Ulcer
Syphilis
LGV
HSV
Chancroid
Vaginal Discharge
Gonorrhoea
Chlamydia
Trichomonas
Bacterial Vaginosis
Others
Ophthalmia Neonatorum
Gonorrhoea
Chlamydia
Others
Congenital Syphilis
No syndrome, but laboratory test positive (serology
positive)
Syphilis
HSV
Chlamydia
FOUR-WEEKLY DATA COLLECTION
Confirmed cases (Age and sex specific):
Campylobacter
Chicken Pox (Varicella)
Cholera**
Ciguatera poisoning
Congenital Rubella Syndrome
Dengue fever
Dengue Haemorrhagic Fever/Shock Syndrome
Diphtheria
E. coli (pathogenic)
Influenza
Leprosy (Hansen's Disease)
Leptospirosis
Malaria
Measles
Meningitis due to Haemophilus influenzae
Meningococcal Infection due to Neisseria meningitidis
Mumps
Pertussis
Plague**
Pneumonia due to Haemophilus influenzae
Pneumonia due to Streptococcus pneumoniae
Poliomyelitis
Rabies
Rotavirus
Rubella
Salmonellosis
Shigellosis
Severe Acute Respiratory Syndrome**
Tetanus
Tetanus (neonatal)
Tuberculosis (pulmonary)
Tuberculosis (extra-pulmonary)
Typhoid and Paratyphoid Fevers
Viral Encephalitis / Meningitis
Viral Hepatitis A
Viral Hepatitis B
Yellow Fever (urban or sylvatic)**
58
HIV/STI Surveillance for CAREC Member Countries
59
HIV/STI Surveillance for CAREC Member Countries
Unit 4
HIV Case Surveillance
Unit 4
structure
The unit is divided into three sections. The sections are convenient blocks
of material for a single study session. A final case study is provided for use
upon completing all units.
This section focuses on case surveillance of HIV infection required for
basic level HIV surveillance.
Introduction
At the beginning of the AIDS epidemic, CAREC promoted the use of the
UNAIDS First Generation HIV/AIDS surveillance guidelines. The
guidelines were focused on the reporting of AIDS cases and
implementation of periodic and regular HIV sero-prevalence surveys
(surveys that estimate HIV prevalence by testing blood for HIV antibody)
among different population sub-sets. However, after 10 years of their
implementation, serious shortcomings were identified, creating the need for
the development of the Second Generation HIV/AIDS surveillance
guidelines. These guidelines, created by WHO/UNAIDS in 2000, added
three essential elements to the first generation HIV/AIDS surveillance
guidelines:



reporting of persons diagnosed with HIV infection
classification of countries based on the level of the HIV epidemic to be
used as a guide for the nature of the national response to the epidemic
behavioural surveillance surveys (BSS) to improve monitoring of
behaviours that put individuals at risk of contracting HIV.
But, since the HIV epidemic is a rapidly evolving one, gaps were identified
in the Second Generation HIV/AIDS surveillance guidelines as well. These
gaps were addressed in the CAREC Third Generation HIV/AIDS/STI
surveillance guidelines.
CAREC developed these Third Generation guidelines after numerous
regional and international consultations on a new regional HIV/AIDS/STI
surveillance framework. This framework puts emphasis on survey
methodologies and minimum data requirements from each of its four
components:
60
HIV/STI Surveillance for CAREC Member Countries
Third Generation HIV/AIDS/STI Surveillance, continued
1. Epidemiological (HIV, AIDS and STI surveillance, AIDS mortality
data, periodic STI and HIV sero-prevalence surveys among different
population sub-groups, HIV molecular epidemiology and STI and HIV
antimicrobial resistance surveys)
2. Behavioural surveillance (periodic sexual behaviour surveys among
sub-groups, using quantitative and qualitative methods)
3. Audits of coverage and quality of care for STI patients and people
living with HIV/AIDS
4. Evaluation of specific prevention and control programmes (such as
prevention of mother-to-child transmission).
Information from such activities will allow national HIV/AIDS control
programmes to:
 better understand and monitor sexual behaviours and practises
driving the HIV/AIDS epidemic in a country or within a country
 better assess HIV/AIDS/STI trends over time
 direct public health actions to target vulnerable groups and the most
prevalent risk behaviours
 measure coverage and quality of care for people living with
HIV/AIDS and STI patients
 assess the impact of HIV/AIDS prevention and control
programmes.
Current HIV/AIDS
surveillance
systems
Current HIV/AIDS/STI surveillance systems are heavily based on case
reporting (surveillance system in which persons who are identified as
meeting the case definition are reported to public health authorities) of
AIDS, syndromic surveillance(surveillance system in which a diagnosis of
the infection is made through the presence of symptoms using a standard
case definition) of STI and a few HIV sero-surveys to determine HIV point
prevalence (the amount of a particular disease present in a population at a
single point in time) among pregnant women.
In each country, each new AIDS case is reported to the National
Epidemiologist or, in some instances, to the National AIDS Programme
Co-ordinator. The reporting form usually includes information on name (or
coded identifier), age, sex, address, marital status, socio-economic status,
reported mode of transmission, date of HIV diagnosis and date of AIDS
diagnosis.
Sexual behaviour (number of partners, use of condoms, contact with sex
workers, sexual orientation) and clinical information (major and minor
signs, indicator disease) are sometimes also reported, as requested on
61
HIV/STI Surveillance for CAREC Member Countries
Current HIV/AIDS surveillance systems, continued
country reporting forms. In most cases, the same form is used to report HIV
diagnosis and AIDS. Limited information is available on who fills out the
forms, and where and when this occurs.
From the individual reports, the Epidemiology Units or National AIDS
Programmes report aggregate data to CAREC using a quarterly reporting
form that gathers information on sex, age groups and reported mode of
transmission. Although AIDS is internationally notifiable, some countries
do not have a clear national policy on AIDS reporting.
Evaluations of the national surveillance systems, conducted by CAREC,
have shown that the level of under-reporting of AIDS cases varies from
country to country, ranging from 10% to 70%, with an overall level of
under-reporting in CMCs estimated to be about 35%. This high level of
under-reporting is related to the weaknesses of the surveillance systems.
This is influenced by various factors, including multiple case definitions,
lack of standardisation of systems and lack of human resources.
Among many lessons, it was recognised that there is a need:
 to standardise and simplify surveillance systems for HIV and other
STIs
 to conduct training on “basic” HIV/STI surveillance
 to address issues of confidentiality and data security.
The lessons learned will be addressed in this workshop.
What is Third Generation Surveillance?
Third generation surveillance seeks to answer the following questions:





Who has the conditions?
When did they get them?
Where do they live?
How have they put themselves at risk of contracting HIV and STIs?
How many reported cases need treatment?
HIV/STI surveillance systems should be based on scientifically sound and
well-known case definitions and well-established indicators for monitoring
the epidemic and evaluating impact of interventions. They should also
include orderly consolidation and evaluation (Quality Assurance) of data,
and prompt dissemination to those who need to know.
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HIV/STI Surveillance for CAREC Member Countries
Purpose of a
comprehensive
surveillance
system
A comprehensive HIV/STI surveillance system is one that:







collects, analyses and publishes accurate and timely epidemiological,
behavioural and care information
monitors the spread (incidence, prevalence and underlying behaviours
and factors) and the impact (health and social) of these conditions
contributes to a better understanding of the magnitude of diseases, risk
behaviours, and the care and treatment coverage for individuals
suffering from these conditions
contributes to a better understanding of the disease trends in different
vulnerable groups and in different socio-economic strata and
geographic areas
provides timely and accurate data for public health planning
supports health planners and decision-makers to plan and evaluate the
impact of interventions and programmes (such as safer sex practises,
reduction in incidence or prevalence of diseases, quality of care)
enhances interventions to treat and decrease spread of infection.
The surveillance strategy should address core epidemiological, behavioural
and care information systems. These systems should be responsive to the
country’s data needs for priority conditions such as HIV and other STIs.
The overall aim of HIV/STI surveillance is to provide health planners and
decision-makers with appropriate information to reduce spread, morbidity
and mortality from HIV-infection and other STIs. This will also reduce
costs associated with treatment of advanced disease, human suffering and
death.
Levels of
surveillance
systems
Along with the differences between countries of the Caribbean—in
population sizes, economic circumstance, geography, etc.—capacities in
terms of HIV/STI surveillance differ greatly. In an effort to provide
guidance and to standardise systems across member countries, CAREC has
described three levels of surveillance systems—basic, intermediate and
advanced. These are described in Table 4.1.
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HIV/STI Surveillance for CAREC Member Countries
Table 4.1 Components of basic, intermediate and advanced surveillance systems.
Basic Surveillance System
Surveillance component
Data source
HIV case surveillance
 Laboratories (public & private)
(all WHO clinical stages and
 Public health facilities (hospitals, health centres)
deaths)
 PMTCT sites
 VCT (public, private, mobile sites)
 private physicians
 major private institutions
 hospices
 vital registration
 TB clinics, hospitals, control programmes
HIV sero-prevalence
 HIV sero-prevalence data amongst pregnant women
surveillance
Intermediate Surveillance System All the above, plus:
Surveillance component
Data source
HIV sero-prevalence
High-risk groups
surveillance
Behaviour surveillance
General population*
surveys/BSS
Youth*
(*depending on the epidemic High-risk groups
state and the risk groups)
Other
Surveys amongst PLWHA re: quality of care, stigma and
discrimination
Advanced Surveillance System All of the above, plus:
Surveillance component
Data source
Special surveys
HIV resistance monitoring and surveillance
Viral genotyping
Other special studies
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HIV/STI Surveillance for CAREC Member Countries
Section 4.1: HIV Case Surveillance
What this section
is about
This section provides an overview of the history, purpose and importance
of HIV case surveillance. It explains:




the natural history of HIV disease and the points in the course of
disease that are important to monitor for surveillance purposes
the history of case reporting and how changes in HIV testing
methods and HIV treatments have affected reporting
recommendations and practises
the purpose of HIV case surveillance
how other types of HIV programmes can provide data for
surveillance purposes.
Warm-up
questions
1. What are the key differences between HIV sero-surveillance and HIV
case surveillance?
2. True or false? Reporting of all HIV tests performed on women coming
in for antenatal care is a component of AIDS case reporting.
True
False
3. Which of the following is NOT a purpose of advanced HIV
disease/AIDS case reporting?
a. Determining the burden of disease attributable to advanced HIV
disease/AIDS in the region
b. Assessing trends in advanced HIV disease/AIDS cases
c. Providing information on the opportunistic infections associated
with AIDS cases
d. Measuring HIV incidence
4. List four stages in the natural history of HIV disease that are target
points for HIV case surveillance.
5. List three reasons for conducting HIV case surveillance.
6. Which stage in the life cycle of HIV requires use of special (not
routine) laboratory tests?
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HIV/STI Surveillance for CAREC Member Countries
Introduction to HIV Case Surveillance
What you
will learn
By the end of this unit, you should be able to:
 describe the stages in the natural history of HIV disease that are
important for surveillance purposes
 describe the primary purposes of conducting HIV case surveillance
 describe the differences between HIV case surveillance, advanced HIV
disease case surveillance, AIDS case surveillance and HIV serosurveillance
 list four types of HIV-related programmes that can report cases to an
HIV case surveillance system.
The Relationship Between the Natural History of HIV and
Surveillance
Natural history of
HIV and target points
for surveillance
HIV infection produces a disease that lasts for many years. Shortly after
becoming infected, an individual may experience signs and symptoms of
this initial infection (called primary HIV infection). These signs and
symptoms may include fever, muscle aches and swollen glands. Often
these symptoms go unnoticed by the infected person. Some people do not
experience any symptoms or signs of primary HIV disease.
Following primary infection, most HIV-infected persons are without
symptoms for several years. Over time, the immune system of infected
persons weakens and this results in the development of HIV-related
illnesses. The end-stage of disease has been called AIDS.

Prior to antiretroviral therapy (ART), the average time from HIV
infection to onset of clinical AIDS in North American patients was 10
years.

Without ART, the duration between HIV infection and onset of AIDS
is shorter in developing countries than in North America.
The advent of effective ART has considerably reduced the rate of
progression to AIDS in areas where these drugs are available. It has also
been associated with changes in the types of opportunistic infections that
appear with AIDS.
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HIV/STI Surveillance for CAREC Member Countries
Natural history of HIV and target points for surveillance, continued
In order to fully understand the HIV epidemic, several key stages in the
disease should be monitored. These include:





HIV incidence (that is the number or rate of new HIV infections)
HIV prevalence (that is the number or rate of all persons living with
HIV during a specified time period, regardless of how long they have
been infected or whether or not they are aware of their infection)
The incidence of advanced HIV disease (or AIDS)
The prevalence of advanced HIV disease (or AIDS)
Deaths from advanced HIV disease (or AIDS).
Measuring each of these points in the course of HIV disease provides for a
complete HIV surveillance system. These data can be used to determine
the need for prevention or medical interventions and to assess of the
impact of such programmes. However, in resource-constrained settings, it
is often difficult to include all of these target points in the surveillance
system. In those areas where not all of these points can be counted, efforts
should be made to obtain information on as many of these as possible.
Measurement
of HIV incidence
In order to know the direction of the HIV epidemic, it is important to have
information on the number or rate of new HIV infections occurring in the
population. Effective HIV prevention programmes should result in a
decrease in the transmission of HIV. Although only a few methods exist
for measuring HIV transmission and these methods are far from perfect,
there are some tests that can be done to estimate the number and rate of
new HIV infections. One method is the BED assay, a serologic test that
uses a modified version of a standard HIV test. Although it is not used to
diagnose new HIV infections, it is being used as a surveillance tool.
A different and more widely used method of measuring HIV transmission
is monitoring of trends in HIV prevalence among the youngest women
attending antenatal clinics—for example, females aged 15 to 24 years old.
This use of sentinel HIV sero-surveillance has been the most common way
of estimating HIV incidence in developing countries.
Though difficult to measure accurately, methods to estimate the number
and rate of new HIV infections are valuable and are likely to become an
increasingly important component of HIV surveillance.
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HIV/STI Surveillance for CAREC Member Countries
Measurement of
HIV prevalence
HIV prevalence is the number of persons living with HIV infection during
a specified time period. This includes persons with any stage of HIV
disease (newly acquired infections, long-standing asymptomatic
infections, late-stage disease including AIDS). Prevalence includes HIVinfected persons who may not be aware of their infection. Prevalence does
not include HIV-infected persons who have died. It is difficult to have a
complete and accurate count of all persons infected with HIV. As a result,
prevalence is often estimated. HIV prevalence estimates can be done using
a variety of data sources including HIV/AIDS case surveillance systems,
HIV sero-surveys and special studies. In developing countries, sentinel
sero-surveys of women attending antenatal clinics have been the most
frequently used data for prevalence estimates.
Measurement of
advanced HIV
disease/AIDS
incidence
Obtaining an accurate and complete count of persons with advanced HIV
disease/AIDS is important as a way to anticipate need for medical care and
other support services. These data can also be used as a measure of the
success of treatment of HIV disease at earlier stages. In countries where
ART is becoming increasingly available, the number of persons with
advanced HIV disease/AIDS should decline, even in the face of ongoing
HIV transmission.
Counting persons with advanced HIV disease/AIDS is done through case
surveillance. Persons with advanced HIV disease/AIDS are symptomatic
and, if they seek care, can be reported from healthcare facilities.
Measurement
of HIV-related
mortality
Deaths from AIDS have dropped dramatically in countries where
antiretroviral treatment has been widely used. Thus, tracking deaths from
advanced HIV disease/AIDS is an important measure of the success of
treatment programmes. In addition, understanding the proportion of deaths
from HIV-related disease and the age groups most severely affected is an
important measure of the magnitude of the problem. However, in order to
accurately count and track trends in HIV-related deaths, countries must
have well-functioning vital statistics registries. Alternative methods for
mortality surveillance exist and can be used in countries in which vital
statistics registries need major strengthening.
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HIV/STI Surveillance for CAREC Member Countries
History of HIV/AIDS Case Surveillance
The start of
AIDS case
surveillance
In 1981, surveillance began for a newly recognised constellation of
diseases now known as AIDS. AIDS has been characterised by a set of
diseases (called AIDS-defining opportunistic illnesses).
The U.S. Centers for Disease Control and Prevention (CDC) developed a
surveillance case definition for this syndrome that was based entirely on
the presence of one or more of these AIDS-defining illnesses. Over time, it
was determined that AIDS was the result of infection with HIV, and in
1985, a serologic test for HIV was developed and rapidly became widely
available. The inclusion of diagnosis of HIV infection became an integral
part of the AIDS case definition in the United States.
As the epidemic grew, countries established their own surveillance
systems for this new condition. The World Health Organization’s (WHO)
Global Programme on AIDS (GPA) assumed global co-ordination and
technical leadership for surveillance, including the development of clinical
and surveillance case definitions.
The initial WHO AIDS case definition (Bangui) was based entirely on the
presence of AIDS-defining illnesses. However, as HIV testing became
available in developing countries, the WHO AIDS case definition was
expanded in 1994 to include serologic results. In some countries, the
expanded case definition has not been used consistently because of:




inadequacy of HIV testing reagents
poor laboratory infrastructure
lack of training of health personnel
lack of quality control procedures.
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HIV/STI Surveillance for CAREC Member Countries
Previous WHO
Recommendations
Previously, WHO had recommended two approaches to AIDS case
surveillance; universal and sentinel case reporting. In universal AIDS case
reporting, all healthcare facilities reported patients with AIDS using the
integrated disease surveillance, in which a standard report form is used to
collect aggregate data on all reportable communicable diseases. The goal
with universal reporting was to streamline reporting practises and to
minimise duplication of effort. WHO also recommended that sentinel
AIDS case reporting be conducted as a complementary activity to
universal AIDS case surveillance.
In sentinel AIDS case surveillance, a few diligent healthcare facilities
were selected to report detailed information on the AIDS cases they
treated. Sentinel AIDS case surveillance provided more information on
AIDS cases than did universal AIDS case surveillance, but the former only
included AIDS cases from selected facilities. Consequently, universal
AIDS case surveillance provided a more complete count of the number of
AIDS cases, while sentinel AIDS case surveillance provided more detailed
information on AIDS cases.
Current need
for HIV case
surveillance
ART has dramatically altered the natural history of HIV disease.
Antiretroviral medications delay progression from HIV disease to the
advanced stages of HIV disease and reduce HIV-related mortality. In fact,
one measure of the success of ART programmes is an unchanging (or
increasing) HIV prevalence with a concurrent decrease in AIDS incidence
and HIV-related deaths.
Prior to the widespread use of ART, AIDS case surveillance could provide
a reasonable estimate of the prevalence of HIV infection (including
asymptomatic HIV disease, as well as advanced HIV disease and AIDS).
The expected reduction in AIDS incidence in the presence of expanded
use of ART means that AIDS case surveillance cannot provide a stable
way of monitoring the HIV epidemic.
An additional change that supports the need for movement to HIV
surveillance is the expanded availability of HIV testing, including use of
rapid HIV tests. As HIV testing in developing countries becomes more
widespread, it provides the opportunity to monitor HIV infections that
may occur prior to the development of AIDS. In other words,
asymptomatic HIV-infected persons can also be monitored. Expansion of
AIDS case surveillance to include persons with HIV infection who have
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HIV/STI Surveillance for CAREC Member Countries
Current need for HIV case surveillance, continued
not developed late stage HIV disease (AIDS) may provide a more
complete picture of the HIV epidemic.
Thus, there are two significant reasons to conduct HIV case surveillance:


to provide a complete count or estimate of the number of persons with
HIV infection
to measure the effectiveness of treatment programmes and other
interventions.
Several factors must be in place for an HIV case surveillance system to
work. These are:



people at risk for HIV infection must be tested
people must feel that there is a benefit to getting an HIV test
people who are receiving HIV tests must feel that their privacy will be
protected.
Outputs of
HIV case
surveillance
Accurate, timely and complete information on persons with HIV infection
is required to:






determine the burden of disease attributable to HIV in the
country/region
assess trends in incidence and prevalence of HIV infection and disease
determine the burden and impact of HIV on health services
provide information on the opportunistic infections associated with
advanced HIV disease
determine the characteristics and risk factors (transmission categories)
of persons with HIV infection
use data from HIV surveillance for:
o advocacy
o resource mobilisation and allocation
o programme planning for prevention, support, care and
treatment
o targeting interventions to appropriate sub-populations
o monitoring and evaluation.
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HIV/STI Surveillance for CAREC Member Countries
Surveillance
terminology
It is important to note that HIV case surveillance is not the same thing as
HIV sero-surveillance. These systems have different goals and different
uses; they are complementary, not competing. A complete surveillance
system will have both. Table 4.2 explains HIV surveillance terminology.
Table 4.2. HIV Surveillance terminology.
HIV sero-surveillance
(also called HIV seroprevalence)
HIV case surveillance



measures the prevalence of HIV infection
using serological survey methods
does not report on individual patients
reports persons diagnosed with HIV
infection, regardless of clinical stage or
immunological status
Discussing
the table
Looking at Table 4.2, answer the following questions:
a. Which clinical stages are included in HIV case surveillance?
b. What is one difference between HIV case surveillance and HIV serosurveillance?
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HIV/STI Surveillance for CAREC Member Countries
Sources of HIV Case Surveillance Reports
Programme
data and
case surveillance
data
Patient information collected at programmes that provide service or care to
persons with HIV infection can be used in two different ways:
 as a source of information for the completion of HIV case
surveillance reports
 as a source of data to supplement HIV case surveillance data and
data from HIV sero-prevalence surveys in annual HIV/AIDS
epidemiological profiles and other such reports.
Programme data can provide information for HIV case surveillance if:



programmes collect and retain patient-level information
systems are in place (at facilities that do HIV diagnosis) to record
that cases have been reported to the surveillance programme
programme staff are trained on how to report cases and have
access to case surveillance forms (passive surveillance method) or
surveillance officers provide assistance in completing case report
forms (active surveillance).
In addition, case reporting is more likely to occur if surveillance officers:



meet with programme managers to discuss the importance of case
surveillance, provide case surveillance forms and conduct training
adequately assure the security and confidentiality of case
information (particularly if cases are reported using patient names)
provide regular feedback to the healthcare workers/providers
regarding the results from case surveillance.
Supplemental programme monitoring data may be obtained from:




voluntary counselling and testing sites: data on numbers tested and
percent HIV-infected
programmes for prevention of HIV transmission from mother to child:
data on number of women tested, percent positive, percent of positives
provided with ART, percent of babies tested for HIV, percent of
babies with HIV infection
care and treatment programmes: data on persons receiving HIV
support, care and ART treatment, data on survival time after start of
treatment, early warning indicators for emergence of HIV drug
resistance, etc.
services for orphans and vulnerable children.
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HIV/STI Surveillance for CAREC Member Countries
Programme data and case surveillance data, continued
To ensure efficient use of time and resources, those programmes that serve
the largest number of HIV-infected persons should be targeted for
assisting with case reporting. Ideally, these sites would be used for active
case reporting.
Section 4.1 Exercises
Warm-up
review
Take a few minutes now to look back at your answers for the warm-up
questions at the beginning of the unit. Make any changes you want.
Small group
discussion
Get into small groups to discuss these questions.
1. Which AIDS case definition has been used in your country, the Bangui
definition, the WHO expanded case definition or something else?
Discuss the utility of this case definition. Has it undergone any changes
in the past? If yes, when and why?
2. Does your country have a functional HIV and/or AIDS case
surveillance system? Specify which system exists.
3. If your country is not conducting HIV and/or AIDS case surveillance,
discuss why.
4. If your country does have an HIV or AIDS case surveillance system:
a. Who does the reporting and from what types of facilities?
b. How have the data from the system been used?
5. Is HIV case surveillance conducted in your country?
6. Describe existing challenges in your country that affect efficient HIV
case surveillance. What are some possible solutions for these
challenges?
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HIV/STI Surveillance for CAREC Member Countries
Apply what
you’ve learned/
case study
Work on this case study independently.
1. You are the national surveillance officer in Cariba, which is estimated
to have one of the highest prevalence rates of HIV in the region. The
national AIDS control programme is interested in expanding and
improving its surveillance programme, and the CAREC epidemiologist
is conducting country visits to discuss ways of improving surveillance.
During your meeting with the CAREC epidemiologist, you are asked to
suggest additional surveillance activities in your country that you
believe could be implemented and successful. Describe what these
activities would be.
2. The CAREC epidemiologist has indicated that there is interest in using
data collected from HIV and other care programmes for HIV case
surveillance. What programmes would you suggest using?
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HIV/STI Surveillance for CAREC Member Countries
Section 4.2: Clinical Staging and Surveillance Case Definitions
for HIV infection
What this
unit is about
This unit provides an overview of the history and purpose of clinical
staging and surveillance case definitions for HIV infection. It includes:




a brief history of the clinical staging system and surveillance case
definitions for HIV infection
a description of the recent (2006) WHO HIV clinical staging criteria
and criteria the presumptive and definitive diagnoses
a description of the recent (2006) WHO surveillance case definitions
an explanation of the link between HIV clinical staging, antiretroviral
treatment recommendations, and HIV case surveillance
Warm-up
questions
1. True or false? In the revised (2006) adult and paediatric WHO HIV
clinical staging systems, there are four clinical stages.
True
False
2. True or false? The revised (2006) WHO advanced HIV infection case
definition includes the same clinical stages for adults and infants.
True
False
3. List the three options for HIV case surveillance that are recommended
in the revised (2006) WHO guidelines.
8. True or false? The clinical criteria included in the revised (2006)
WHO advanced HIV infection surveillance case definition only
include definitive diagnosis of clinical events.
True
76
False
HIV/STI Surveillance for CAREC Member Countries
Warm-up questions, continued
9. List four reasons why HIV clinical staging systems were developed.
10. True or false? Previous surveillance case definitions in developing
countries focused only on stage 4 (AIDS).
True
77
False
HIV/STI Surveillance for CAREC Member Countries
Introduction to Clinical Staging and Surveillance Case
Definitions for HIV infection
What you
will learn
By the end of this unit, you should be able to:



describe the revised (2006) WHO HIV clinical staging criteria and the
presumptive and definitive criteria
describe the revised (2006) WHO surveillance case definitions
explain the link between HIV clinical staging, antiretroviral treatment
recommendations and HIV case surveillance.
History of Clinical Staging and HIV/AIDS Case Surveillance
Definitions
Previous clinical
staging criteria
Clinical staging criteria for HIV and AIDS were developed to:




provide uniformity for clinical evaluation of persons with HIV
infection
act as an indicator of prognosis
guide clinical management of patients
help study the natural history of HIV infection.
The Walter Reed staging classification system was developed in 1986 for
use in United States military personnel. This staging system included both
clinical and laboratory manifestations of HIV disease. The inclusion of a
laboratory component and the list of AIDS opportunistic illness in the
Walter Reed staging classification system worked well in developed
countries, but were not suitable for developing countries.
To provide a clinical staging system that could be used worldwide, the
WHO convened a panel of experts in 1989 and developed the 1990 staging
system for adults that was based primarily on clinical criteria. A paediatric
staging system was adopted in 2003.
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HIV/STI Surveillance for CAREC Member Countries
Previous surveillance
case definitions
The initial WHO AIDS surveillance case definition (Bangui) was
developed in 1986 and was designed for use in developing countries. It
was modified in 1989 to include HIV serologic criteria for use in areas
with laboratory capacity. It was further modified in 1994 in response to
changes in the European Centres for Disease Control and Prevention
surveillance case definitions. The WHO has not previously developed a
surveillance case definition for HIV disease alone (that is, persons with
HIV infection who do not meet the surveillance case definition of AIDS).
Updated clinical
staging system
The increased availability of ART has resulted in the need for an updated
HIV clinical staging system that:
 harmonises the 2002 three-stage paediatric staging system with the
1990 four-stage adult system
 includes stages at which prophylactic and antiretroviral therapy should
be considered and recommended
Anticipating wider distribution of ART, WHO convened a panel of
experts in 2004 to develop updated clinical staging systems for adults and
children. Regional consultations were held throughout 2005, including one
at PAHO in October, 2005. The revisions to clinical staging systems were
adopted in 2006. The revisions are intended to capture the treatable nature
of HIV infection in the presence of ART. Clinical staging should be done
at the time of initial HIV diagnosis, upon entry into clinical care for HIV
infection and at each clinical visit.
Table 4.3. WHO clinical classification of established HIV-infection.
HIV-associated
symptomatology
WHO Clinical Stage
Asymptomatic
1
Mild symptoms
2
Advanced symptoms
3
Severe symptoms
4
The 2006 WHO clinical staging criteria and presumptive and definitive
criteria for recognising HIV-related clinical events in adults and children
can be found in Annexes 6.1 through 6.4, as shown in Table 4.4, on the
next page.
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HIV/STI Surveillance for CAREC Member Countries
Updated clinical staging system, continued
Table 4.4. Unit 4 annexes on WHO clinical staging of HIV/AIDS and
presumptive and definitive criteria of HIV/AIDS-related clinical events.
Annex
Information provided
4.1
WHO clinical staging of HIV/AIDS for adults and adolescents with
confirmed HIV infection (2006)
4.2
WHO clinical staging of HIV/AIDS for infants and children with
confirmed HIV infection (2006)
4.3
Presumptive and definitive criteria for recognising HIV/AIDSrelated clinical events in HIV-infected adults and adolescents (2006)
4.4
Presumptive and definitive criteria for recognising HIV/AIDSrelated clinical events in HIV-infected children (2006)
The revised staging systems include:


presumptive clinical diagnoses that can be made in the absence of
sophisticated laboratory tests
definitive clinical criteria, which require confirmatory laboratory tests.
With expansion of laboratory capacity in developing countries, including
those in the Caribbean, the WHO developed an immunologic classification
system for HIV infection. These criteria are based upon the known decline
in CD4 cells with the progression of HIV disease. Listed below are the
age-related values and associated degree of immunodeficiency. Note that
for children under 5 years of age, the CD4 percent rather than absolute
count should be used.
Table 4.5. WHO immunologic classification of established HIV-infection
(2006).
Age-related CD4 values
< 11
months
(CD4+ %)
12 – 34
months
(CD4+ %)
36-59
months
(CD4+ %)
≥ 5 yrs
(mm/3)
> 35
> 30
> 25
> 500
Mild
30 - 35
25 – 30
20 – 25
350−499
Advanced
25 - 29
20−24
15−19
200−349
<25
<20
<15
<200 or <15%
HIV-associated
immunodeficiency
None/not significant
Severe
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HIV/STI Surveillance for CAREC Member Countries
Updated surveillance
case definitions
Changes to the clinical staging of HIV infection, combined with the
expanded use of ART, have resulted in a need to revise case surveillance
recommendations. Previous case definitions have focused exclusively on
reporting persons who met the Bangui or expanded AIDS case definition.
WHO now recommends that reporting be expanded to cover the entire
spectrum of HIV disease; that is, HIV case surveillance. WHO
recommends that countries standardise their reporting practises.
Countries may report:
 all HIV cases (clinical stages 1-4)
 cases with advanced HIV disease (clinical stages 3 and 4)
 cases with AIDS (clinical stage 4).
There are two significant reasons to conduct HIV case surveillance:
 to provide a complete count or estimate of the number of persons with
HIV infection (because AIDS case reporting does not include
asymptomatic HIV-infected persons)
 to measure the effectiveness of treatment programmes and other
interventions.
For HIV case surveillance, WHO recommends that HIV cases diagnosed
and not previously reported in that country should be reported using a
standard case definition such as those presented in Table 4.6
Table 4.6. WHO case surveillance definitions (2006).
Adults and adolescents and children > 18 months
Positive HIV antibody testing (rapid or laboratory based EIA).
This is usually confirmed using a second HIV antibody test (rapid
or laboratory-based EIA) that relies on different antigens of
different operating characteristics than the initial test. The
antibody test can be confirmed by virologic testing as well.
And / or
Positive virologic test for HIV or its components (HIV-RNA or
HIV-DNA or ultrasensitive HIV p24 antigen) confirmed by a
second virologic test obtained from a separate specimen taken at a
different time period.
Children aged below 18 months
Positive virologic test for HIV or its components (HIV-RNA or
HIV-DNA or Ultrasensitive HIV p24 antigen) confirmed by a
second virologic test obtained from a separate specimen taken
more than four weeks after birth.
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HIV/STI Surveillance for CAREC Member Countries
Updated surveillance case definitions, continued
Countries reporting cases of advanced HIV disease should do so using a
standard case definition, such as the one presented in Table 4.7. Reporting
should include those persons with advanced HIV disease who were not
previously reported in that country. Reporting should be done at the time
the person is initially diagnosed with advanced HIV disease.
Table 4.7. WHO advanced HIV case definitions (2006).
Category
Advanced HIV in infants,
children, adults and adolescents
with documented HIV infection
Children > 6 years, adolescents
and adults with documented HIV
infection
Children < 6 years with
documented HIV infection
Clinical/immunological criteria
 Presumptive or definitive
diagnosis of any one stage 3 or 4
condition (as defined in annex
2.3 and 2.4).
 CD4 count less than 350/ mm3.
 %CD4 < 30 in those less than 11
months of age
 %CD4 < 25 in those aged 12-35
months
 %CD4 < 20 in those aged 35-59
months.
AIDS case surveillance is not required in countries that conduct reporting
of advanced HIV infection. Countries reporting cases of AIDS should use
the most recent WHO case definition (clinical stage 4 or CD4 count less
than 200 or less than 15%). Reporting should include those persons with
AIDS who were not previously reported in that country. Reporting should
be done at the time the person is initially diagnosed with AIDS.
Reporting
of primary HIV
infection
There is no standard case definition of primary HIV infection. However,
primary HIV infection is of great importance, particularly since it
represents recently acquired HIV infection and because persons with
primary HIV infection are highly contagious.
Persons with primary HIV infection may present with profound transient
lymphopaenia (including low CD4) and opportunistic infections, but these
infections should not be confused with clinical staging events associated
with established HIV infection. Primary HIV infection can be identified by
recent appearance of HIV antibody or by identifying viral products (HIV-
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HIV/STI Surveillance for CAREC Member Countries
Reporting of primary HIV infection, continued
RNA or HIV-DNA and/or ultrasensitive HIV p24 antigen) with negative
(or weakly reactive) HIV antibody.
It is anticipated that the Centers for Disease Control and Prevention will
develop a case definition for reporting of persons with primary HIV
infection. This should facilitate the reporting of primary HIV infection in
the United States and elsewhere. Until that time, persons with primary
HIV infection can be reported as having HIV infection (Clinical Stage I).
Linking HIV Clinical Staging, ART Use, and HIV Case
Surveillance
Initiating ART
Clinical staging and CD4 counts/percents can be used to determine the
best time to begin antiretroviral treatment The WHO has developed
separate treatment recommendations for use in areas in which CD4 testing
is available and areas in which such testing is not available.
The WHO antiretroviral treatment recommendations for adults and
adolescents are detailed in Table 4.8.
Table 4.8. WHO antiretroviral treatment recommendations for adults and
adolescents.
If CD4 testing is:
WHO ART recommendation for adults
and adolescents
 WHO clinical stage 4 (AIDS), regardless
Available
of their CD4 count
 WHO clinical stage 3 whose CD4 count is
<350 cells/mm3
 WHO clinical stages 1 or 2 when the CD4
count is < 200 cells/mm3
Not available
 WHO clinical stage 4 (AIDS) regardless
of total lymphocyte count
 WHO clinical stage 3, regardless of total
lymphocyte count
 WHO clinical stages 2 with a total
lymphocyte count < 1200 cells/mm3
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HIV/STI Surveillance for CAREC Member Countries
Linking staging,
ART use, and case
reporting
As described on the previous page, clinical staging is used:


to determine the best time to begin treatment for HIV disease
as a key component of the surveillance case definitions.
Systems in which advanced HIV disease is reported (clinical stages 3 and
4) can provide information on the number of patients eligible for ART,
whereas HIV case surveillance (reporting of all clinical stages), can
provide information on the proportion of HIV diagnoses that are eligible
for ART.
The link between staging, ART use and case reporting is useful for
surveillance purposes. HIV case surveillance is generally done by
healthcare providers, usually from hospitals and clinics that provide ART.
Thus, patients who are receiving care at these facilities will have their
clinical stage determined. This is particularly useful in those countries in
which reporting of advanced HIV disease or AIDS case reporting is
conducted.
In those settings, persons on ART are likely to include those who should
be reported to the public health authorities. The new clinical staging
system, HIV treatment recommendations, and surveillance case definition
and reporting recommendations should facilitate optimal care of HIVinfected persons and improve case reporting.
84
HIV/STI Surveillance for CAREC Member Countries
Section 4.2 Exercises
Warm-up
review
Take a few minutes now to look back at your answers for the warm-up
questions at the beginning of the unit. Make any changes you want.
Small group
discussion
Get into small groups to discuss these questions.
1. Discuss the changes made in 1989 and 1994 to the WHO AIDS
surveillance case definition (Bangui)? Why were these changes made?
2. In 2006, the WHO adopted an updated HIV/AIDS clinical staging
system and surveillance case definition. Why was an updated
HIV/AIDS clinical staging system necessary?
3. What does the revised staging system include?
4. Although there is no standard case definition for primary HIV infection,
what can be learned from reports of persons with primary HIV
infection?
Apply what
you’ve learned/
case study
Work on this case study independently.
1. As an HIV surveillance officer for Cariba, you are charged with
standardising the country’s HIV reporting practises. What processes
would you implement to insure that HIV case surveillance is
standardised?
2. Cariba recently began providing free antiretroviral therapy to HIVinfected individuals and uses the WHO antiretroviral treatment
recommendations to determine the best time to begin antiretroviral
therapy.
a. In the Northern District of Cariba, CD4 testing is available.
What are the WHO recommendations for when adults and
adolescents should begin ART?
b. In the Western District of Cariba CD4, testing is not available.
What are the WHO recommendations for when adults and
adolescents should begin ART?
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HIV/STI Surveillance for CAREC Member Countries
Section 4.3: Components of an HIV Case Surveillance System
Introduction to an HIV Case Surveillance System
What you
will learn
By the end of this section, you should:




have knowledge of case definitions for surveillance purposes
be able to list potential HIV reporting sources
be able to describe the difference between active and passive
surveillance systems
know the variables on a case report form and be able to incorporate the
elements of case definitions into your country’s notifiable disease list.
The primary functions of HIV surveillance programmes are to monitor the
epidemic and provide data for prevention efforts. The data can also be
used to plan for treatment programmes by projecting the number of
persons who will need HIV care and treatment. The roles and
responsibilities of the national HIV surveillance programme are discussed
later in this section.
Figure 4.3 shows events that should be monitored during a case’s disease.
Monitoring each of these events will provide data to assist in planning
prevention and care and treatment programs.
Figure 4.3. Monitoring the spectrum of HIV disease.
Sentinel Events
HIV exposure
(children)
HIV infection
1st positive HIV
test
1st CD4 test
1st viral load
Test
Advanced HIV disease
(1st CD4 T-cell count <350
cells/µl or WHO clinical
stage 3 diagnosis)
AIDS
(1st CD4 T-cell count
<200 cells/µl or WHO
clinical stage 4 diagnosis)
Death
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HIV/STI Surveillance for CAREC Member Countries
Defining Reportable Events
HIV case
definitions
Countries should standardise HIV case definitions for surveillance
purposes. All persons meeting the case definition should be reported to the
national surveillance programme. See Tables 4.6 and 4.7 for the
surveillance case definitions.
Notifiable
condition or
reportable
events
Once HIV case definitions are finalised, work with appropriate staff to
incorporate the elements of the case definitions in to the country’s
notifiable disease list. There is also a need to train healthcare staff on the
reportable sentinel events for the notifiable disease. For example, all HIVrelated tests could be reportable to the surveillance unit. This would
include positive HIV EIA, western blots, viral load or CD4 tests.
Case Finding
Identifying
reporting
sources
Surveillance programmes should identify reporting sources where HIV
diagnosis, care and treatment occur. Reporting sources should include
public and private clinics, healthcare programs, and hospitals. The
following are some examples of reporting sources:










laboratories
healthcare clinics (health centres)
ART treatment clinics
TB clinics
voluntary HIV counselling and testing sites
hospice (initially)
hospitals
blood banks
programmes prevention of mother-to-child HIV transmission
vital statistics registries.
Educating
providers
Providers of case information should be educated regarding reporting
requirements, including laws and regulations, case definitions, specific
data elements, case surveillance forms, laboratory reports, and timeliness
of reporting.
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HIV/STI Surveillance for CAREC Member Countries
Educating providers, continued
Report sources must identify liaison(s) or contact person(s) who will be
responsible for case surveillance and explain to him/her/them how the data
will be used for programme planning. Disseminating surveillance data
back to the providers will also assist with timely case reports. It is
important to pay special attention to training providers on reportable
events, how to report (case surveillance form) and what to report (the
variables on the case surveillance form). It is important that providers
understand all the variables on the case report form. Obtaining risk
information is always challenging; developing display charts/posters can
assist providers to accurately collect this critical piece of information.
Ways to
identify cases
New cases of HIV infection are found by both passive and active
surveillance. The definitions of active and passive surveillance are:

Active surveillance: surveillance activity where the public health
surveillance staff regularly contact reporting facilities (hospitals,
clinics, physician offices, laboratories) to identify potential/suspect
HIV cases.

Passive surveillance: surveillance activity that is initiated by persons
at the health facilities—that is, the surveillance office receives HIV
case reports from physicians, laboratories, or other individuals or
institutions without regularly contacting the reporting sources.
Comprehensive case (surveillance) information may be contained in
documents obtained by both active and passive surveillance. For example,
the surveillance office may receive an electronic laboratory report through
passive reporting. However, for complete case information, surveillance
office staff may contact or travel to the diagnostic or treatment facilities to
obtain the additional data items not provided on laboratory reports.
Laboratoryinitiated
reporting
Identify all laboratories in your geographic area. If positive HIV EIA/WB
or CD4 or viral load tests are reportable, work with the labs to develop a
system where they can report cases to the surveillance unit in a
confidential and timely manner. Special efforts should be made to
automate systems as much as possible, so as not to cause unnecessary
burden to the staff members. This will be critical to ensuring timely
reporting of cases.
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HIV/STI Surveillance for CAREC Member Countries
Laboratory initiated reporting, continued
There is a minimum set of information the lab should provide for each
case. This set of information allows the surveillance unit to follow up with
the provider to complete the case report form. These are:









patient’s name or code
sex
date of birth
lab identifier
specimen collection date
date of test
type of test
test result
requester/provider name and telephone number.
Following up
with provider
Once a positive HIV test has been reported to the surveillance unit, the
surveillance officer can follow up with the provider to obtain the
remaining information on the case surveillance form.
Updating case
information
It is important to update case information through disease progression
from asymptomatic infection through to advanced HIV infection, AIDS
and death.
Note: The HIV database needs to hold longitudinal data on cases without
overwriting case information.
Duplicate cases
The surveillance system should be able to correctly distinguish newly
reported persons from persons previously reported. Failing to properly link
newly submitted case reports to previously reported cases leads to overcounting; incorrect linking of duplicate reports can result in undercounting and contamination of existing records with data from another
case. Because doctors, hospitals, laboratories, and other sources may be
required to report all HIV diagnoses whether or not they are newly
identified, duplicate case reporting within a country may not be identified
during routine case entry into the surveillance database (that is, duplicate
case reports may not be readily identified as such). Eliminating duplicate
reports on a regular basis is an important component of maintaining a
reliable surveillance database and ensures accurate case counts at the
national levels.
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HIV/STI Surveillance for CAREC Member Countries
Mandatory
variables for
counting a cases
A minimum set of information must be available in order to count a patient
as an HIV case.
The mandatory variables required to count a case include:






case identifier (name or code)
sex
date of birth
date of diagnosis (specimen collection date or date of diagnosis by
healthcare provider)
test result date
date of death (essential to accurately count the number of persons
with HIV).
As an HIV case may be reported from multiple sources or from the same
source multiple times, having a minimum set of required information allows
the national surveillance unit to accurately match an individual to his/her
record and ensure that each HIV case is only counted once. This is of
particular importance when a previously reported patient progresses through
the stages to advanced HIV disease, AIDS and death.
Identifying
missed cases
Missed cases can be identified from:





anecdotal comments of cases not being reported
timeliness assessments that show cases reported more than six months
after the diagnosis date
finding unreported cases by reviewing death certificates
matches with other databases
assessments of completeness of reporting from particular providers
(See Unit 5).
Reporting chain
Each country must determine the reporting chain for HIV case reports.
This may involve forwarding report forms from healthcare providers to a
sub-national level, but ultimately HIV case reports should be sent to the
national surveillance unit, where a complete database should be housed.
This will allow de-duplication of cases reported from several sources,
thereby giving a more accurate picture of the HIV situation for the
country. At the national level, the office of the National Epidemiologist is
responsible for the transmission of aggregate reports to CAREC.
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HIV/STI Surveillance for CAREC Member Countries
Roles and
responsibilities
Roles and responsibilities of reporting sources:





complete one HIV case surveillance form for each person newly
diagnosed with HIV infection
complete an HIV case surveillance form for each person who
experiences a change in clinical status (for example, clinical diagnosis
of HIV-advanced disease or AIDS, CD4 count less than 350, etc—see
Figure 4.7)
complete an HIV case surveillance form for each HIV-infected person
who dies (and include cause of death, if available)
submit forms to sub-national or national level surveillance unit, as per
reporting chain for the country (under confidential cover, see Unit 7)
record each instance of case reporting to the surveillance unit on
patient’s clinical record.
Roles and responsibilities of the national HIV surveillance programme:










solicit, receive, review and file HIV case surveillance forms on a timely
basis
ensure case surveillance forms are filled out completely, accurately and
clearly
evaluate each form to determine whether the case meets the criteria for
HIV diagnosis
evaluate each case report to establish whether it contains enough
information for determination of clinical stage (documentation of the
clinical stage, clinical information that can be used to determine clinical
stage, or immunological information, such as CD4 count/percent)
ensure that minimum data elements are documented (that is,
demographic characteristics, geographic region, risk information,
diagnosis date and report date)
conduct follow-up investigations on cases of epidemiologic importance
maintain a complete and accurate HIV surveillance database that is
secure and accessible only to authorised personnel
identify reporting sources, provide an active liaison with physicians and
institutions reporting cases, abstract medical records to generate case
reports when necessary, and supply routine feedback to providers in
cases reported
analyse, interpret and disseminate HIV surveillance data
critically assess the performance of the surveillance programmes
through ongoing monitoring of surveillance activity.
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HIV/STI Surveillance for CAREC Member Countries
Case Report Form
Purpose of an
HIV case
surveillance form
The purpose of the case surveillance form is to standardise the information
that is collected on all reported HIV cases.
An HIV case surveillance form is designed to:
 collect information that promotes understanding of HIV infection,
morbidity and mortality
 facilitate reporting an HIV case (person diagnosed with HIV)
 define minimum variables to be collected
 standardise collecting of variables.
Timing of HIV
case surveillance
A patient should be reported when:
 the person is diagnosed with HIV infection, regardless of clinical status
 an HIV patient progresses to clinical stage 3 or CD4 less than 350
(advanced HIV disease)
 an HIV patient progresses to clinical stage 4 or CD4 less then 200
(AIDS)
 an HIV-infected person dies.
Elements of a case
surveillance form
The elements of a case surveillance form include the following:
A. Information for tracking of reporting
 Date form completed (with report date)
 Date received by national surveillance unit
 Type of report: new or update
B. Information concerning the person reporting the case
 Name of reporting source facility
 Name of person reporting the case
 Address of person reporting the case
 Telephone number of person reporting the case
 Email address of person reporting the case
C. Information concerning the diagnosis facility
 Name of diagnosing facility
 Facility record number
 Address of diagnosing facility
 Diagnosis facility type
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HIV/STI Surveillance for CAREC Member Countries
Elements of a case surveillance form, continued
D. Information concerning the patient
 Patient first name*
 Patient’s last name*
 Patient’s maiden name, if applicable *
 Patient’s coded identifier (if used)*
 Date of birth* (actual or estimated)
 Sex*
 Current city/town of residence
 Current country of residence
 Country of birth
 Current pregnancy status (for females only)
 Current (vital) status: Alive, dead, unknown
 Date of death, if applicable
 Cause of death: HIV related or other/unknown
E. Risk factors/exposures
 Sex with males(s)
 Sex with female(s)
 Sex with person(s) of known HIV-positive status
 Sex with sex worker(s)
 Injected non-prescription drugs
 Perinatal exposure to HIV
 Received transfusion(s) of blood, blood products or
clotting factors
 Received a transplant of tissue or organ or artificial
insemination
 Occupational exposure while working in a healthcare
setting or laboratory, or provided safety or emergency
services
F. Laboratory results
 Type(s) of confirmatory HIV-positive test
 Date specimen was obtained from patient*
 Test result dates*
 Date healthcare provider received confirmed HIV result
G. Clinical/immunological information
 Date of first WHO HIV clinical stage 1 or 2 diagnosis
 Date of first WHO HIV clinical stage 3 diagnosis
 Date of first WHO HIV clinical stage 4 diagnosis
 Date of specimen collection for first CD4 test
 Date of specimen collection for first CD4 count <350
 Date of specimen collection for first CD4 count <200
* These variables are required for a case to be counted.
93
HIV/STI Surveillance for CAREC Member Countries
Completing a
case surveillance
form
Anyone who provides services to an HIV-infected patient may complete an
HIV case surveillance form. HIV infected persons access diagnostic,
support, care and treatment from the following facilities/programmes:









programmes for prevention of mother-to-child HIV transmissions
voluntary counselling and testing facilities
tuberculosis clinics
general health clinic
antenatal clinics
clinics for Sexually Transmitted Infections (STI)
private healthcare provider
facilities that provide antiretroviral therapy
laboratories
Note: Laboratories may have a different mechanism of reporting HIV
cases than other health providers, and may not have access to the
minimum data elements to count a case. You should establish reporting
procedures mechanism with your laboratories to ensure timely reporting of
HIV cases.
Modifying and
piloting the
case surveillance
form
Generic HIV case surveillance forms are shown in Appendix H. This form
should be modified and piloted for use in your country, using the CAREC
guidelines that specify minimum variables that must be retained in order
to ensure standardisation across countries.
You must ensure that the language used in your case surveillance form is
relevant to your country and that the flow and layout of the document is
understandable and user-friendly.
Providing education and instructions on how to complete the surveillance
form is essential to achieve accurate and standardised case surveillance.
94
HIV/STI Surveillance for CAREC Member Countries
Protection of
confidentiality
To achieve acceptance of HIV case surveillance, national and sub-national
surveillance programs must ensure the confidentiality of patient
information and must have the public’s trust in that confidentiality.
Confidentiality is essential, not only for effective surveillance, but also to
protect patients’ rights to privacy and prevent any potential for disclosure
or discrimination. In addition to the potential for adverse consequences for
the individual, any breach of confidentiality from the HIV surveillance
registry could impact the public’s confidence in public health systems and
compromise the completeness of case surveillance (See Unit 7 on
Confidentiality and Data Security).
95
HIV/STI Surveillance for CAREC Member Countries
Summary

HIV surveillance includes a variety of activities that provide information
about:
o the number and characteristics of persons with HIV, advanced HIV
disease, and AIDS
o the impact of antiretroviral therapy
o the impact that treatment has on HIV/AIDS-related and mortality.

The WHO recently revised the surveillance case definition and clinical
staging system to include the following components:
o advanced HIV disease includes clinical stages 3 and 4
o AIDS (clinical stage 4) can continue to be reported
o countries should move toward reporting of all HIV cases, regardless of
the clinical stage.

Focal persons for communicable disease surveillance must be identified at
each level: health facility, sub-national (if applicable) and national.

A standardised reporting format must be developed for use at all levels:
reporting health facilities, sub-national (if applicable) and national level.
Sample forms and guidelines for modification are provided in Appendix
H.

Data should be analysed, interpreted and used at the local level for public
health action, as well as at national level.

With expanded efforts to provide antiretroviral therapy (ART) to persons
with advanced HIV disease, HIV surveillance activities can include
monitoring the number of persons receiving ART and the impact of ART
on morbidity and mortality.

Improvements in the recording of vital events provide the opportunity to
document deaths caused by HIV disease.
96
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study
You are the new HIV programme director in Cariba. Cariba has conducted
antenatal sero-surveillance for many years, and the results from those
surveys have been used to estimate the HIV prevalence in the country. The
prevalence in young adults in Cariba is estimated to be 3% in urban areas.
HIV case surveillance has been recommended, but only a few facilities have
reported HIV cases. Because of the high HIV prevalence, it is assumed that
the prevalence of AIDS is also very high.
Cariba has received additional resources that are to be used for providing
HIV-infected patients with ART. Because of its high prevalence, Central
Province, which has a large urban area, has been selected as a site that will
offer ART. The provision of ART to HIV-infected patients is co-ordinated
by your colleague (Dr. MB), the clinical care co-ordinator.
To begin planning for treating patients, you set up a meeting with Dr. MB.
Together you decide that the initial focus should be on conducting
surveillance for persons with advanced HIV disease. How would you go
about doing this?
You and Dr. MB must make decisions regarding how ART should be
provided in Central Province. You both agree to follow the WHO treatment
guidelines. What are the WHO criteria for initiating ART?
You and Dr. MB decide to offer ART at three clinics in Central Province
and at the medical college there. How will this affect your plans for
advanced HIV disease case surveillance?
What are some initial steps that should be taken prior to offering ART?
97
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
What are the outcomes that you think should be monitored in order to
evaluate the impact that ART is having on patients with HIV?
What methods can be used to measure the impact of ART on mortality?
Five years have passed. You meet with Dr. MB to discuss producing a
surveillance report. Take the following data and develop a report. You
should use the data to develop figures and tables and explanatory text for
each figure or table.
Data from advanced HIV disease case reporting.
Year
2008
2009
2010
2011
2012
Number of cases
450
623
757
650
576
Data from advanced HIV disease case reporting are available for three
years. Reporting was from three facilities and the data obtained had more
detail.
98
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility A, Year: 2005
Total reported: 142
Sex
Male
Female
65
77
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
16
122
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month(intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 60
99
47
98
53
68
20
73
15
36
44
60
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility A, Year: 2006
Total reported: 257
Sex
Male
Female
125
132
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
12
198
28
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 77
100
156
230
156
204
25
42
29
11
24
32
58
93
2
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility A, Year: 2007
Total reported: 289
Sex
Male
Female
112
173
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
10
228
38
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 75
101
202
253
178
256
38
64
38
15
44
35
78
89
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility B, Year: 2005
Total reported: 138
Sex
Male
Female
60
76
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
10
112
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 65
102
42
102
50
72
180
70
8
39
43
65
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility B, Year: 2006
Total reported: 243
Sex
Male
Female
96
144
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
10
206
13
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 68
103
166
225
158
208
45
52
13
21
29
38
56
98
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility B, Year: 2007
Total reported: 274
Sex
Male
Female
12
144
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
9
239
48
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 65
104
205
238
157
246
28
75
34
26
49
46
79
78
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility C, Year: 2005
Total reported: 89
Sex
Male
Female
43
51
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
6
80
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 48
105
27
68
43
48
16
33
9
31
39
52
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility C, Year: 2006
Total reported: 178
Sex
Male
Female
74
91
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
13
154
11
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 59
106
147
166
142
154
23
33
21
13
38
68
1
63
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Facility C, Year: 2007
Total reported: 238
Sex
Male
Female
110
128
Transmission category
Mother To Child
Injection Drug Use
Homosexual/Bisexual
Blood Or Blood Products
Heterosexual
Other (Please Specify)
DNK
9
212
Clinical features
Weight loss  10% / abnormally slow growth
Chronic diarrhoea  1 month
Prolonged fever  1 month (intermittent or constant)
Persistent cough  1 month
Generalised pruritic dermatitis
History of herpes zoster
Oropharyngeal candidiasis
Chronic progressive or disseminated herpes simplex virus
Generalised lymphadenopathy
Recurrent episodes of severe pneumonia
Kaposi’s sarcoma
Cryptococcal meningitis
Tuberculosis
Invasive cervical cancer
Disabling neurologic impairments
Treatment
Antiretroviral/HAART
Prophylaxis
Anti-TB prophylaxis or treatment
Treatment for opportunistic infections
Number of deaths: 62
107
197
233
165
213
27
53
31
9
2
9
40
55
68
86
HIV/STI Surveillance for CAREC Member Countries
Unit 4 Case Study, continued
Data from routine HIV testing of TB patients. Reporting was from five
sites.
Year
2004
2005
2006
2007
Number of TB patients
569
479
510
499
108
Number tested for HIV
547
445
503
489
Number HIV+
270
238
214
189
HIV/STI Surveillance for CAREC Member Countries
Annex 4.1. WHO clinical staging of HIV/AIDS for adults
and adolescents with confirmed HIV infection.
109
HIV/STI Surveillance for CAREC Member Countries
Annex 4.2. Revised WHO clinical staging of HIV/AIDS for
infants and children with confirmed HIV infection.
110
HIV/STI Surveillance for CAREC Member Countries
Annex 4.2. Revised WHO clinical staging of HIV/AIDS for infants and children with
confirmed HIV infection, continued
111
HIV/STI Surveillance for CAREC Member Countries
Annex 4.3. Presumptive and definitive criteria for
recognising HIV/AIDS-related clinical events in HIVinfected adults and adolescents (older than 15 years)
112
HIV/STI Surveillance for CAREC Member Countries
Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
113
HIV/STI Surveillance for CAREC Member Countries
Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.3. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected adults and adolescents (older than 15 years), continued
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Annex 4.4. Presumptive and definitive criteria for
recognising HIV/AIDS-related clinical events in HIVinfected children.
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected children, continued
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected children, continued
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected children, continued
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected children, continued
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected children, continued
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events in HIV-infected children, continued
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
events in HIV-infected children, continued
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
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Annex 4.4. Presumptive and definitive criteria for recognising HIV/AIDS-related clinical
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Unit 5
Monitoring Surveillance System Quality
Overview
What this unit
is about
The periodic evaluation of surveillance systems for sexually transmitted
infections (STIs), HIV or AIDS is necessary in order to maintain:


a responsive and relevant system of monitoring shifting disease trends
effective disease control and management interventions
This unit discusses how to conduct an effective evaluation with emphasis
on evaluating the completeness, timeliness, and validity (or accuracy) of
the data collected in the surveillance system.
Warm-up
questions
1. List three aspects of a disease under surveillance that an effective
surveillance system should monitor.
2. List two methods to measure completeness of case reporting.
3. List two methods to report the timeliness of case reporting.
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Introduction
What you
will learn
By the end of this unit you should be able to:




Describe three elements of a disease under surveillance that a
surveillance system should monitor
define three key surveillance system attributes
list tasks for evaluating a surveillance system
describe methods to measure the completeness, timeliness, and
accuracy of your surveillance system.
Purpose of
public health
surveillance
Public health surveillance is conducted in order to describe a disease that
is determined to be of public health importance. Surveillance is done to
guide public health intervention (such as prevention, treatment, control).
Why
evaluate?
Once you’ve set up an HIV/AIDS surveillance system, you want to make
sure that it remains effective as the epidemic shifts over time. If your
system is no longer effective, you will not have the right information to
control HIV/AIDS.
What Surveillance Systems Describe
Describing public
health conditions
Public health surveillance is done to address important public health
diseases so that effective control measures can be put into place. In order
to describe the condition under surveillance, the surveillance system must
be able to describe the condition by:
 person
 place
 time
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Describing the
person
The surveillance system should be able to describe the characteristics of
persons affected by the condition in terms that are relevant to the
condition. For HIV infection, these characteristics should include at least
the following information:



date of birth
sex
transmission mode.
Public health reporting may include collecting patient names. In those
situations where a patient must be contacted by public health authorities,
there must be some mechanism enabling this to occur. In addition, persons
with HIV infection are diagnosed only once. In other words, patients are
not cured of these conditions and, therefore, cannot be re-infected. For a
country (or city or district) to have an accurate count of persons with HIV
infection, there must be a mechanism in place that can distinguish
previously reported persons from newly reported ones. Keep in mind that
a person may be reported to the public health authorities more than once.
This might occur if a patient changes the place where he or she receives
medical care. Therefore, case reports of persons with HIV infection must
include a case identification code (patient name or unique code).
The same code will be used throughout each country, and ideally
throughout the CAREC member countries.
You might also consider collecting information on the following
additional characteristics:
 marital status
 educational level achieved
 employment status.
The decisions regarding which characteristics to gather information on
will depend upon the setting in which surveillance is conducted. For
example, in some countries, information on marital status is not
considered necessary to understand who is affected by HIV/AIDS.
Describing place
Documenting information on where people with HIV/AIDS live is done
by collecting information that describes where the patient lives and
receives care at the time of diagnosis with HIV infection. This information
includes:
 residence (e.g., city/district/country of diagnosis)
 facility of diagnosis (the type of facility as well as its name and
address)
 facility that submitted the case report.
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Describing
time
Monitoring trends in HIV tells us whether the epidemic is getting better or
worse; monitoring trend in AIDS in the era of universal access to
antiretroviral treatment tells us whether treatment efforts are effective in
reducing morbidity. To accurately describe these trends, case reports of
persons with HIV infection must include:



date of HIV diagnosis
date of diagnosis of HIV advanced disease (WHO clinical stage 3) or
AIDS (WHO clinical stage 4)
date of case report.
The date of diagnosis is used to understand the actual trends in the disease
while the date of report is used as a way of understanding the bias caused
by delays in reporting. Both of these dates are necessary in order to
evaluate your surveillance system.
Collecting
information
specific to
HIV/AIDS
The HIV epidemic presents unique challenges to public health. For
example, reports of persons with HIV infection tell us about persons who
are infected and when they were diagnosed, but do not give us information
on when HIV infection was actually acquired. Although there are now
laboratory methods that can be used to narrow the time period during
which infection was likely to occur, these are not routinely done in the
Caribbean region.
Clinical information can be used to gain some understanding of how far in
the course of disease a person was diagnosed. This is done by collecting
information on clinical markers of advanced disease. Advanced HIV
disease can be determined by:
 clinical HIV stage 3 or 4
 low CD4 cell counts < 350 cells/mm3.
The recommended clinical information to collect on persons reported with
HIV infection includes:
 the earliest CD4 count
 date of the earliest CD4 test
 clinical stage at diagnosis (this allows for distinguishing HIV
disease, advanced HIV disease and AIDS)
 any HIV disease-specific treatment currently or previously used
(such as antiretroviral treatment, prophylactic treatments, or
treatment of opportunistic infections)
 HIV viral load results (earliest and its date) may also be
considered.
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Ensuring accurate
collection of
surveillance data
A number of factors contribute to the accuracy and completeness of
information collected on persons diagnosed with HIV/AIDS. These
include:
 the clarity of surveillance forms
 the quality of training and supervision of persons who complete
surveillance forms
 the care exercised in data management.
Evaluating Surveillance Systems
Purpose of
evaluation
Comprehensive guidelines have been developed that address methods used
to evaluate surveillance systems. System evaluation provides information
to improve services and delivery. Specific objectives of ongoing
surveillance system evaluations may include the following:






to appraise and prioritise the disease events to be kept under
surveillance
to assess how the system can detect and report these diseases
to assess the quality of the epidemiologic information produced
to assess how the system can respond to these diseases
to assess how surveillance results affect disease control and policy
to identify which elements of the system can be enhanced in order to
improve the quality of information
Figure 5.1. Elements of a well-focused evaluation.
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Discussing
the figure
Look at Figure 5.1, on the previous page, and answer the following
questions:
a. List the possible outcomes of a well-focused evaluation.
b. What are other potential uses of the results of an evaluation not listed
in the figure above?
Evaluation Process
Six evaluation
tasks
The evaluation process is organised into a series of discrete tasks that are
summarised, then described, below. For more detail, refer to the following
resources:


Guidelines for the Evaluation of HIV/AIDS/STI Surveillance Systems
in CAREC Member Countries (CAREC 2004), available on CD and at
http://www.catin.org/publications.htm
Updated Guidelines for Evaluating Public Health Surveillance
Systems (Centers for Disease Control and Prevention, 2001), available
at www.cdc.gov/mmwr/preview/mmwrhtml/rr5013a1.htm.
The six tasks for evaluating a surveillance system are:
1. Engage the stakeholder groups in the evaluation. Stakeholders are
those with an interest in the surveillance activities.
2. Describe the surveillance system to be evaluated.
3. Focus the evaluation design.
4. Gather credible evidence regarding the performance of the surveillance
system.
5. Justify and state conclusions and make recommendations.
6. Ensure use of evaluation findings and share lessons learned.
Each of these tasks is described on the next page.
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Task 1, Engage
stakeholders
Stakeholders include:






public health practitioners
healthcare providers
data providers and users
representatives of affected communities
governments at the district, province and national levels
professional and private non-profit and donor organisations.
Stakeholders may want to define the questions to be addressed by the
surveillance system evaluation. They may also want to decide how to use
the findings from the evaluation. Therefore, they should be involved in the
planning stages of the evaluation.
Examples of ways to engage stakeholders:
 Meet individually with the key people listed above.
 Invite participants to join the evaluation team.
Task 2, Describe
the system
Describe the surveillance system to be evaluated:

Describe the public health importance of the health-related event under
surveillance. Include indices of frequency, indices of severity,
disparities associated with the health-related event, costs,
preventability and public interest.

Describe the purpose and operation of the system. Include objectives,
planned uses of data, case definition, where in the organisation the
system resides and the level of integration with other systems. Draw a
flow chart of the system and the components of the system.

Describe the resources used to operate the system, such as funding
sources, personnel requirements, travel and supplies.
Task 3, focus
the design
To focus the evaluation design:





Determine the specific purpose of the evaluation.
Identify stakeholders who will receive findings.
Consider what will be done with the information generated from the
evaluation.
Specify the questions that will be answered by the evaluation.
Determine standards for assessing the performance of the system.
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Task 4, gather
evidence
Gather credible evidence regarding the performance of the surveillance
system. Listed below are the key attributes of a surveillance system. In a
comprehensive evaluation, each of these should be described and
evaluated. Describe the following system attributes:

Simplicity - Is the surveillance system as simple and as easy to operate
as possible?

Flexibility - Can the surveillance system respond and adapt to new
situations?

Data quality - Are the data recorded in the surveillance system
complete and valid (that is, have they been collected and verified so
that they more accurately portray the actual epidemic)?

Acceptability - Are people and organisations willing to participate in
the surveillance system? Consider patients, healthcare providers and
clinics, and district and provincial health departments.

Sensitivity - What proportion of cases does the surveillance system
detect? Can the system detect outbreaks? Can it monitor changes in the
number of cases over time?

Positive predictive value - Does the system have a high positive
predictive value? That is, is there a high probability that cases
identified by the system are actually cases of HIV infection?

Representativeness - Are the prevalence data generated representative
of the actual occurrence of cases over time and the distribution in the
population by place and person?

Timeliness - Is the system able to provide data in a timely manner?

Stability - Does the system collect, manage and provide data properly
without failure? Is the system operational when needed?
Task 5, state
conclusions
State and justify conclusions and make recommendations.


Justify conclusions through appropriate analysis, synthesis,
interpretation and judgment of the gathered evidence.
Make recommendations for improvements as modifications to or
continuations of the public health surveillance system.
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Task 6, share
lessons
learned
To share evaluation findings and lessons learned:

Develop strategies for communicating the findings from the
evaluation.
Tailor recommendations to relevant audiences.
Recommendations for improvements should be distributed to all
partners and sites involved in sentinel surveillance.


Focusing the
evaluation in
CAREC countries
Although all of the attributes described in this unit should be evaluated
periodically (for example, every three to five years), CAREC recommends
that member countries evaluate the following three attributes on an annual
basis.
 completeness (sensitivity)
 timeliness
 validity
Standards for each of these attributes should be determined and each time
the surveillance system is evaluated, it should be measured against the
standards.
Table 5.1. Standards for CAREC member countries.
Data quality indicators
Standards
Completeness
85%
Timeliness
66% within 6 months of diagnosis
in year 1 of HIV case surveillance
85% within 1 year of diagnosis
Validity
90%
These standards can be increased over time as the surveillance system
becomes stronger.
Each of these three attributes should be monitored to assess how well the
case reporting system is achieving its objectives. This not only improves
your local surveillance system, but also prepares your system for national
or Caribbean regional inspections.
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Data Flow in the Caribbean Region
Local to
national
Understanding the flow of case information is necessary in order to
evaluate the surveillance system effectively. In the Caribbean, the flow of
case information occurs:



from the healthcare facilities (clinics, hospitals and government/
private physician offices) to parish/county/district/health region
level, as appropriate for the country
from district/county/parish to the national level
from the national level to the Caribbean regional level (CAREC).
Measuring Completeness
Measuring the
true frequency
of HIV infection
/AIDS incidence
Completeness of reporting measures the proportion of all true cases that
are reported to the surveillance system. This definition of completeness
should not be confused with measuring the completeness of information
that is collected on a case report form. Ensuring that a case report form is
filled out correctly and completely is an important component of a high
quality surveillance system and will be discussed as part of evaluating the
validity of case data.
Methods to measure
completeness
Completeness of reporting should be evaluated for a specified time period,
such as one year. You can measure completeness of reporting in one of
two ways:
1. expanding surveillance activities to find (and report) any missed
cases
2. estimating the proportion of all cases that were reported in a
specified time period, using a capture-recapture methodology.
Expanding case
finding
Expanding case finding has the benefit of both measuring the
completeness of reporting and of identifying missed cases that can be
reported and added into the surveillance system.
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Expanding case finding, continued
Expanding case finding can be done by:
 increasing active surveillance activities
 identifying a secondary database to examine for missed cases
Some examples of increasing active surveillance activities include:
 visiting healthcare facilities from which passive reports have been
received and reviewing the clinic records for missed cases
 reviewing laboratory records at a facility to identify laboratory
tests done that are likely to be indicative of HIV/AIDS, such as
CD4 tests, HIV antibody or viral load tests or tests for
Pneumocystis carinii.
Identifying a secondary database to match against previously reported
cases can be challenging in certain settings. It requires that:



reported cases be maintained in an electronic database that lists
each case separately and includes a name or unique identifier
the secondary database includes persons with HIV infection and
lists each individual separately by the same identifier as the
HIV/AIDS case registry
the secondary database has sufficient information to identify a
person with HIV infection.
Examples of secondary databases that have been used for identifying
missed cases and measuring the completeness of reporting include:
 vital registries of deaths in which the cause of death is listed (and
would include HIV and /or AIDS)
 a registry of patients receiving HIV-disease-related medications.
To calculate the completeness of reporting, divide the number of reported
cases by the number of reported cases plus the missed cases (the total of
known cases). Usually completeness is presented as a percent.
Number of previously reported cases
Number of previously reported cases + newly identified (that is, missed)
cases
Either of these methods is likely to result in the identification of cases that
were not reported. Once these cases have been identified they should be
reported.
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Capture-recapture
methods
Capture-recapture is a method that estimates the completeness of reporting
but does not identify missed cases to report. This system can be used in
areas in which reports from multiple sources that concern a single
individual with HIV infection are received at the surveillance unit. For
example, consider reports that pertain to one person received from:
 laboratory reporting
 case reporting from a clinic
 case reporting from a hospital.
The capture-recapture methodology assumes that if all of the reports are
collected, this represents the true universe of cases. To help conceptualise
how this method works, consider the following example, in which HIV
case reporting is done using a unique code and that case reports come
from several sources.
A database is developed, into which all reports concerning all HIVinfected persons are recorded. The first column represents five distinct
individuals reported with HIV. The next two columns are facilities from
which reports are received. One might be a clinic, another might be a
laboratory, etc. A ‘1’ means that a report on this person was received from
this site. A ‘0’ means that a report was not received from this facility.
Table 5.2. Example of case reports from two facilities.
Case number
X239
H750
S000
W298
T298
Facility A
1
0
1
0
0
Facility B
0
0
1
1
1
Use this information to develop a 2X2 table, as follows:
Reported from:
Facility B
Yes
No
Facility A
Yes
No
a
b
c
x
In this table, ‘a’ represents the cases reported from both sources, ‘b’ are
the cases reported only from Facility B, ‘c’ are the cases reported only
from Facility A, and ‘x’ represents missed cases. Then, ‘x’ can be
estimated by the following formula: (bc)/a. Once ‘x’ is determined, the
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Capture-recapture methods, continued
total number of estimated cases and completeness of reporting can be
calculated.
Here are the results, using the example of case reports from Facilities A
and B.
Reported from:
Facility B
Yes
No
Facility A
Yes
No
2
2
1
x
(2X1)/2=1
Thus, X =1. Our total number of cases is the sum of all boxes. This equals
6. The completeness of reporting is the number of counted cases divided
by the total estimated cases. In our example, this is 5/6 or 0. 83.
Completeness is usually presented as a percent. So in this example,
completeness is 83.3%.
Capture-recapture can also be used in a single setting. In this situation, two
time periods are used. For example, instead of Facility A we would collect
reports from a single clinic for six months (January through June). These
reports would be recorded. Reports from the same clinic will be collected
for the period July through December. In this situation your record log
would look like this.
Case number
X239
H750
S000
W298
T298
Reports from
Jan-June
1
0
1
0
0
Reports from
July-Dec
0
0
1
1
1
The analysis would be conducted as described for reports from two
different clinics.
Although these examples provide the conceptual aspects to capturerecapture, there are a number of assumptions that must be made. One of
these is that the reports must all be independent from one another. We
know that in this situation, case reports are not independent. Therefore, for
an accurate estimate of the completeness of reporting, adjustments must be
made. A number of statistical tests can be used to determine the
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Capture-recapture methods, continued
interaction between reporting sites and to develop appropriate adjustments
to the analysis. References regarding use of capture-recapture methods for
estimating completeness of reporting are listed at the end of this unit.
Measuring Timeliness
Definition and
importance
Timeliness refers to how soon after diagnosis of the condition under
surveillance the case was reported to the authorities (for example, the
Minister of Health). In order for surveillance data to be useful in the
implementation of effective prevention and control measures, health
officials must know about diseases in a timely fashion.
Timeliness can be measured as the median time between diagnosis of HIV
or AIDS and receipt of the case report form. In addition, timeliness can be
measured as the proportion of cases that are received within a specified
time period from diagnosis to receipt of report. Typically, when measured
in this way, timeliness is calculated as the proportion of cases reported
within three, six, or 12 months of diagnosis.
International
standard for
timeliness
Reporting forms and the reporting process will be designated by your
national Ministry of Health.
To meet CAREC and international standards:


66% of cases should be reported within 6 months of diagnosis
85% of cases should be reported within a year of diagnosis.
How to measure
timeliness
We need two variables from the set of variables listed above to measure
timeliness:


the date the case was diagnosed
the date the case was reported.
If you have these two variables, you can calculate timeliness. Table 5.3, on
the next page, shows the steps to do this.
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HIV/STI Surveillance for CAREC Member Countries
How to measure timeliness, continued
Table 5.3. Determine the timeliness of case reporting.
Step
1
2
Do this…
Calculate completeness of reporting at 12 months after the diagnosis year. If
completeness is ≥85%, then go to Step 2. (A high rate of completeness is
necessary, because when reporting is not 100% timeliness will be
overestimated.)
Calculate time (number of months) from diagnosis to report:
(report date) - (diagnosis date)
OR
[(year of report)*12) + month] - [((year of diagnosis)*12) + month]
For example, report date is May 2004 and diagnosis date is November 2003.
The time interval (in months) is
[(2004*12) + 5] - [(2003*12) + 11] = 6 months
3
4
Determine the number of cases with a time to report ≤6 months.
Calculate timeliness of case reporting:
Number of cases diagnosed within a year
and reported within 6 months of diagnosis
Number of cases diagnosed and reported
for that diagnosis year
Timeliness can also be calculated as the median time between the date of
diagnosis and the date of report. In this calculation, completeness of
reporting should be at least 85% and the timeliness should be calculated
for a specified time period, as described for calculating the proportion of
cases reported within six or 12 months.
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Laboratory
reporting
timeliness
Laboratory reporting of HIV infection differs from case reporting from
healthcare facilities. In general, laboratory reporting provides notification
to public health authorities of a person with HIV infection, but does not
contain the detailed information collected in a case report form.
However, laboratory reporting is an important element of HIV case
reporting, and its timeliness should be determined separately from the
timeliness of receipt of the case report form.
When you are assessing timeliness of reporting from a specific source,
such as mandated laboratory reporting, completeness is not taken into
account. Here’s the calculation:
Number of (reportable HIV-related) tests received
within (7) days of test date during specified time period
All tests reported during same period
Measuring Validity
Definition and
importance
Validity measures the extent to which the information on the case report
form matches information in the patient record at the health facility.
Validity can be thought of as a measure of the ‘truth,’ assuming that the
patient’s record at the healthcare facility is correct.
How to
check
accuracy
Measuring the validity of information collected in the case report forms is
done by re-abstracting data on previously reported cases and comparing
the information contained in the original and re-abstracted forms. Table
5.4, on the next page, gives top level steps for re-abstraction.
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HIV/STI Surveillance for CAREC Member Countries
How to check accuracy, continued
Table 5.4. Re-abstraction study steps.
Step
Do this…
1
Choose a person not previously involved with the data or site to do the reabstraction check. This person should work for the national surveillance
programme and should be familiar with the case report forms and methods
for reviewing clinic records, abstracting data and completing the case report
form
2
Randomly choose a sample of cases at a site.
3
At the site, go back to patient records (using the unique identification
number) for those chosen as the sample.
4
Compare the information (variables) in the record with MOH records.
5
Record the accuracy of the variables on your national form.
Scheduling
re-abstraction
studies
For re-abstraction studies, you will need to match case surveillance
information to medical record information. The timeframe for reabstracting should be one day to six months after the initial case report.
The timeframe chosen will vary depending on the nature of a country’s
recordkeeping (that is, name or code).
Sampling may also be based on an earlier report year, but it may be
difficult to obtain medical records for cases diagnosed several years
earlier.
Avoid re-abstracting on the same day as the original abstraction, because
bias may be introduced if staff members know re-abstracting is
immediately to follow. The nature of medical records is changing in the
Caribbean. Because archive data may not be available in the future,
re-abstracting should be done in a timely manner.
Once a re-abstraction programme is established, all programmes should
routinely re-abstract demographic, risk factor, laboratory and clinical data
from a representative sample of records once a year to assess the quality
and validity of national information.
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Sampling
strategy
A simple or stratified random sample should be used. Stratification may be
used if re-abstraction is to be done at several distinct facilities. Ideally, all
health facilities from which case reports were submitted will be included
in the sample.
Sample size is calculated once before the beginning of the re-abstraction
study using the prior year's reported case count as a proxy for the expected
reported case count. Sampling of cases may occur throughout the year to
accommodate the intended sampling frame and stay within the
re-abstracting period of one to six months after original abstraction. The
size of the sample should take into consideration the number of case report
forms to review, as well as time and resource constraints. While a sample
of 5% - 10% is usually adequate, in countries with fewer than 100 cases, it
is recommended to include all cases.
Data
collection
The re-abstracted data are collected on hard copy or electronic case report
forms that indicate the data elements to be abstracted. Re-abstracted forms
must be clearly marked as duplicates.
Staff conducting the re-abstraction:



should be aware of the case records that need to be abstracted, but
should not review the original case report form
should work backward from the date when the initial case report form
was completed and re-abstract the data
should make sure that the case identification number/code is included
in the form used for the re-abstraction.
In some situations, the person who is re-abstracting data may come across
new information to add to the case report form. Generally, this would be
something new in the patient’s clinic record. For example, the patient may
have started antiretroviral therapy since the time the initial case report
form was completed. The new information can (and should) be collected
and added into the document-based surveillance database. In order to keep
the new information separate from the evaluation of the validity of
reporting, collect the new information on a separate case report form (that
must have the patient’s unique identification number/code.)
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Planning for Future Evaluations
Regional
monitoring
According to the Interim Policy Guidelines for Regional Communicable
Disease Surveillance System for CAREC member countries (Feb 2005), a
regional communicable disease surveillance system should be evaluated
every three years by CAREC representatives, member countries and
stakeholders and/or partners. This evaluation will include a review and
rationalisation of the syndromes and diseases under surveillance.
Each national communicable disease surveillance system should be
evaluated every six to seven years. CAREC is responsible for coordinating these evaluations, but they will be conducted in collaboration
with countries and partners. All evaluations should aim to describe the
system and assess the three surveillance attributes discussed in this unit.
CAREC is responsible for the development of standard evaluation tools
and indicators for the region.
Guidance from
CAREC
Currently, many CAREC member countries have paper-based systems, but
as countries have resources to switch, databases will be used to track cases
and develop reports.
In preliminary planning discussions, the intention is that the database will
include calculations and reports, such as a Timeliness Report,
Completeness Report and an Accuracy Report. Additional reports will be
needed. For example:


an HIV case-reporting database will include everyone (by case ID, not
name) reported with HIV
a patient monitoring database will record how many are on treatment.
If the two databases are compared, we will have a list of who is not on
treatment, making it relatively easy to compare by case ID if that patient
should be in treatment. The treatment determination is based on clinical
stage and CD4 count. Therefore, some patients should not be in treatment
yet.
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HIV/STI Surveillance for CAREC Member Countries
Class
discussion
Think about the surveillance methods currently used in your
district/country and answer the following questions.
a. What methods have been used to measure completeness of reporting?
b. What methods can you implement that would provide a better estimate
of the completeness of reporting?
c. What are the limitations to the methods previously used and those that
might be undertaken in the future?
Summary
You need to evaluate your HIV/AIDS surveillance system to make sure it
remains effective as the epidemic changes over time. The evaluation
process includes six tasks: engaging stakeholders, describing the
surveillance system, focusing the evaluation design, gathering evidence on
the system’s performance, stating conclusions, and recommendations and
share lessons learned.
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Unit 5 Exercises
Warm-up
review
Take a few minutes now to look back at your answers for the warm-up
questions at the beginning of the unit. Make any changes you want.
Small group
discussion
Get into small groups by country, region or province to discuss these
questions.
1. Has there been a formal evaluation of the HIV/AIDS surveillance
system in your country? If so, which parts of the surveillance system
were evaluated?
2. What was the result of the evaluation? What problems were identified?
3. How were the results shared with district surveillance staff and clinics?
4. How was the surveillance system modified as a result of the
evaluation?
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Apply what
you’ve learned/
case study
Try this case study. We will discuss your answers in class.
Inyo County is in the coastal area of Country X and has the country’s
major port city. A British university has been conducting studies of
commercial sex workers in the port city for nearly a decade. For the last
five years, they have been conducting serial sero-prevalence surveys for
HIV and syphilis.
You are the National Surveillance Officer for Inyo County. You are asked
by the Ministry to evaluate these special studies to determine if the
Ministry should take over sponsorship of the studies and include them in
the provincial sentinel surveillance system.
Now answer the questions below. Look back in the unit for more
information if you wish.
a. How would you start your evaluation?
b. On what would you focus in your evaluation?
c. What criteria would you use to assess the performance of the
system?
d. What would you recommend?
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Unit 6
Surveillance for Sexually Transmitted Infections
(other than HIV)
Section 6.1 Overview of STI Surveillance
What this unit
is about
This unit gives an overview of the components of sexually transmitted
infection (STI) surveillance and explains how the data from STI
surveillance can be used.
Warm-up
questions
1. True or false? Some elements of an STI surveillance system are more
important for HIV surveillance activities. Others are more important
for STI control programme activities.
True
False
2. True or false? STI surveillance data can serve as an indicator of trends
in HIV risk behaviours.
True
False
3. True or false? Aetiologic reporting of syphilis (by stage), gonorrhoea
and chlamydia is considered a basic surveillance activity in the
Caribbean.
True
False
4. Which of the following is not a component of an STI surveillance
system?
a.
b.
c.
d.
STI universal case reporting
STI sentinel surveillance systems
STI testing and treatment
STI prevalence assessment and monitoring
5. True or false? In generalised HIV epidemics, prevalence assessments
should include monitoring gonorrhoea and chlamydia.
True
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HIV/STI Surveillance for CAREC Member Countries
Warm-up questions, continued
6. True or false? An STI surveillance system includes conditions that are
newly acquired, as well as those that represent past infections.
True
False
7. In ___________________ reporting, STI cases are reported by the
specific microbial organism that caused the STI, while in syndromic
reporting, STI cases are reported by the clinical syndrome with which
the patient presents.
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Introduction
What you
will learn
By the end of this section, you should:
 be able to describe methods of conducting STI surveillance
 be able to describe how STI surveillance data can be used in
understanding HIV epidemics
 have an understanding of aetiologic and syndromic reporting
 understand basic, intermediate and advanced STI surveillance.
STI and HIV
inter-relationship
There is a complex inter-relationship between STIs and sexually
transmitted HIV:
Behavioural factors – Both STIs and HIV can be sexually transmitted by
vaginal, anal and oral intercourse. The risk of HIV transmission is
generally greatest for anal intercourse and least for oral intercourse.
Epidemiological factors – Populations with high rates of STIs have high
rates of sexually transmitted HIV.
Host factors – The presence of STIs causes local immunologic changes in
the mucous membranes of the genital track, and, in the case of genital
ulcers, cause tears in the protective layer of skin. These changes make it
easier to acquire and transmit HIV.
How STI
surveillance
data are used
STI surveillance data can be used for a variety of purposes related to the
monitoring, prevention, control and allocation of resources for STIs and
HIV. For example, the data can be used to:







assess the overall burden of STIs
monitor trends in recently acquired STIs
provide information necessary for physicians to treat STI patients and
their sex partners
provide information to assist in planning and managing STI and HIV
prevention and control programme efforts
provide data for the purposes of advocacy and resource mobilisation
and for programme planning, targeting, monitoring and evaluation
serve as a marker of HIV risk behaviours
monitor the number of people infected with HIV who develop an STI,
which is a marker of risky behaviours.
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STI Surveillance and HIV Epidemic State
The role that STI surveillance can play in HIV surveillance differs
depending on the state of the HIV epidemic. It is important to recognise
that the type of HIV epidemic in a given area may change over time.
WHO describes three different types of HIV epidemics. Table 6.1 details
the different states of HIV epidemics and the benefits of STI surveillance
for each.
Table 6.1. State of HIV epidemic and benefit of STI surveillance.
HIV epidemic state
Benefits of STI surveillance
 an early warning system for HIV
Low-level epidemic:
HIV prevalence has not
infection and emergence of HIV in
consistently exceeded 5% in any
new groups or new geographical
group.
areas
 an evaluation tool for HIV
prevention programmes
Concentrated epidemic:
HIV prevalence consistently
exceeds 5% in one or more
groups with high-risk behaviour.
HIV prevalence is less than 1%
in pregnant women.

Generalised epidemic:
HIV prevalence is consistently
greater than 1% in pregnant
women.


a marker for the emergence of HIV
in new groups
a marker of how successful
prevention programmes have been
in high-risk populations
a marker of how successful
prevention programmes have been
in the general population
Discussing
the table
Look at Table 6.1 and answer the following questions:
a. For which epidemic state(s) can STI surveillance be used to determine
the effectiveness of HIV prevention programmes?
b. If HIV prevalence in Cariba is 6% in one population sub-group and
0.5% in pregnant women, what epidemic state is Cariba experiencing?
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STI Aetiologies versus STI Syndromes
Reporting of sexually transmitted infections can be based on the aetiology
or presenting syndrome. These are described and compared below, with a
discussion of their advantages and disadvantages.
Aetiologic
reporting
In aetiological case reporting, the specific STI (for example, gonorrhoea)
is reported. Aetiologic reporting requires laboratory confirmation of
diagnoses and is, therefore, only possible where well-developed systems
of laboratory diagnosis are incorporated into routine STI clinical case
management. In some countries of the Caribbean, the use of laboratory
services for diagnosis is frequently not available for routine care.
Syndromic
reporting
Syndromic case reporting relies on examining a patient and identifying a
syndrome (that is, a group of symptoms that are characteristic of a specific
condition, reported by a patient and detected in an examination). The
limitations of syndromic case reporting are:




The syndromes are not specific to a particular pathogen. Laboratory
studies are required to determine which organisms are causing the
symptoms.
Only urethral discharge in men and non-vesicular genital ulcers in men
and women are likely to reflect recent infection. They are, therefore,
important for detecting trends in STI incidence.
Syndromic reports are a poor tool for assessing disease burden among
women. Clinical infection is not always readily apparent in women
compared to men, so syndromic case reporting may underestimate
disease burden in women.
When possible, STI prevalence assessment and monitoring should be
undertaken as a supplement to case reporting.
Table 6.2 shows the relationship between STI syndromes and aetiologies.
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Table 6.2. The relationship between syndromes and aetiologies.
STI
Possible aetiology
syndrome
Urethral
 caused by Neisseria gonorrhoeae and Chlamydia
discharge
trachomatis
 other possible infectious agents include Trichomonas
vaginalis, Ureaplasma urealyticum and Mycoplasma spp.
Genital ulcer  caused by syphilis, chancroid, lymphogranuloma
(nonvenereum, granuloma inguinale or atypical types of genital
vesicular)
herpes
 reporting only non-vesicular genital ulcers excludes most
herpes infections, which are most often the result of prior
infection
Source: UNAIDS/WHO Working Group on Global HIV/AIDS/STI Surveillance.
Guidelines for Sexually Transmitted Infections Surveillance. Geneva: World Health
Organization, Communicable Disease Surveillance and Response, 1999. Available at
www.who.int/hiv/pub/me/en/GuidelinesforSTISurveillance1999_English.pdf
Discussing
the table
Look at Table 6.2., above, and answer the following questions:
a. Which STI syndrome can be caused by N. gonorrhoeae and C.
trachomatis?
b. What are some of the limitations of reporting vaginal discharge?
Symptomatic and asymptomatic STIs
Incident versus
prevalent cases
To accurately calculate incidence and prevalence, the STI surveillance
system needs to identify:
 which STIs are newly acquired
 which may have been present for a long time.
To identify these conditions, it is important to understand the role of
symptomatic and asymptomatic infections. Some STIs produce symptoms
rapidly after infection. Other STIs may be asymptomatic.
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Incident versus prevalent cases, continued
Symptomatic infections are recently acquired and represent true incident
cases. Herpes simplex virus is an exception to this rule. Because its
symptoms can recur without new infection, it is not possible to determine
if the infection is newly acquired or longstanding. Symptomatic STIs
include:




chancroid
gonorrhoea
early syphilis
chlamydia.
Asymptomatic infections do not produce clinical symptoms. They can be
present for a long time (often months or even years), without the patient
knowing he or she is infected. For this reason, asymptomatic infections
cannot be used to measure incidence. They can, however, be used to
measure prevalence. Asymptomatic STIs include:




latent syphilis (although there can be symptoms associated with
tertiary syphilis)
chronic H. simplex virus type 2 (HSV-2)
chlamydia
gonorrhoea.
Differences
between men
and women
Women have symptoms less often than men, especially for gonorrhoea
and chlamydia. Their asymptomatic infections can only be detected by
laboratory tests.
In general, reporting of male urethritis (inflammation of the urethra) and
male and female non-vesicular genital ulcer disease can be considered to
represent recently acquired infections. Based on the above information,
consider the following information when interpreting STI surveillance
data:

Diagnoses of urethral discharge in men and non-vesicular ulcers in
men and women reflect recently acquired infections. Non-vesicular
ulcers are caused by syphilis and chancroid.

Vesicular ulcers are usually caused by H. simplex virus and may
represent an infection that occurred in the past. However, the vesicles
may easily be scraped off, leaving an ulcer. This makes it difficult to
make a clinical diagnosis of herpes.
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Case Definitions
Diagnosis of STI syndromes should be based on standard case definitions
(Annex 1). A case definition is standard terminology for deciding whether
a person has a particular disease using clinical and/or laboratory criteria.

Uniform case definitions should be used throughout the country to
allow data gathered from the reporting systems to be compared.

When a clinician makes and records a diagnosis, he or she must do so
according to the standard case definition. This helps record officers or
other designated staff to tally correctly. If a clinician counts cases that
do not meet the standard case definitions, this might overestimate STI
incidence.

At the health-facility level, record clerks and persons preparing
surveillance reports should be knowledgeable of the standard case
definitions. They will determine whether or not the diagnosis meets
the case definition. Cases should only be recorded if they meet the
standard case definition, and not simply based on the assigned
diagnosis.
You should be aware that the syndromes used for surveillance purposes
are only a sub-set of syndromes that would be identified in clinical care.
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Components of STI Surveillance Systems
Third-generation
surveillance
Third-generation surveillance uses a variety of methods and tools to gain
a more thorough understanding of the country’s HIV epidemic. These are
based on a country’s needs and resources.
The components of an effective STI surveillance system include routine
data collection and special studies, such as:

STI universal case reporting, where all cases of a particular disease
are reported to health authorities. Universal case reporting can be
either aetiologic or syndromic.

Universal STI reporting, where data on cases diagnosed at health
facilities are aggregated by age, gender and location (for example,
place of residence, health facility, region, county, etc). This can be
either aetiologic or syndromic.

Additional STI surveillance techniques:
o STI prevalence assessment and monitoring
o combined STI/HIV and behavioural surveillance surveys
o monitoring anti-microbial resistance of STI pathogens
o assessing STI syndrome aetiologies
o monitoring and assessing healthcare access, usage and quality for
STI management.
Levels of STI Surveillance – Basic, Intermediate and Advanced
Three levels of STI surveillance are described here:



Basic-level STI surveillance activities should be undertaken in areas
with limited resources and/or weak surveillance systems.
Intermediate-level STI surveillance activities can be conducted in
countries with well-established surveillance systems and good
laboratory infrastructure to support testing.
Advanced-level STI surveillance activities can be conducted in
countries with more extensive resources, well-developed laboratories
and strong surveillance systems.
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HIV/STI Surveillance for CAREC Member Countries
CAREC
recommendations
Table 6.3. Three levels of STI surveillance, and recommendations
for trends analyses and data reporting to CAREC.
Surveillance
Data source
Recommendation for
component
trends analysis and
reporting
Basic-level surveillance system
 laboratories
Collect and analyse
Routine syndromic
(public
and
aggregate data on a quarterly
reporting of:
 urethral discharge
private)
basis, by age group, gender
 vaginal/endocervical
 public health
and area of residence/health
discharge
facilities
facility.
 genital ulcers
(hospitals and
 ophthalmia
health centre)
Send quarterly reports to
neonatorum
 STI clinics
CAREC.
 ANC clinics
Routine aetiologic testing
and reporting of:
 syphilis in pregnant
women
 congenital syphilis
Periodic surveys for
aetiologies (for example,
every three years).
Intermediate-level surveillance system
 laboratories
Aetiologic reporting of:
 gonorrhoea
(public and
 chlamydia
private)
 trichomonas
 public health
 bacterial vaginosis
facilities
 syphilis
(hospitals and
 Herpes simplex
health centre)
virus
 STI clinics
 lymphogranuloma
 ANC clinics
venereum
 chancroid
 congenital syphilis
 ophthalmia
neonatorum
165
Collect and analyse
aggregate data on a quarterly
basis, by age group, gender,
and area of residence/health
facility.
Send quarterly reports to
CAREC.
HIV/STI Surveillance for CAREC Member Countries
Table 6.3. Three levels of STI surveillance, and recommendations for trends
analyses and data reporting to CAREC, continued
Advanced-level surveillance system
Population surveyed
Routine aetiologic
will depend on
reporting of :
 Behavioural and
epidemic state and risk
biological HIV/STI groups
surveillance surveys

Antibiotic resistance
testing

Surveys for quality
of care/treatment
The frequency of surveys
will depend on the
objectives, epidemic state
and available resources.
An example
As an example, think about the STI surveillance components that would
be needed in the following situation.
Cariba has a nearly perfect reporting system for STIs diagnosed
syndromically in public health facilities. Although the existing
surveillance infrastructure provides good data on the annual burden of STI
syndromes in public health facilities, additional information is necessary
to estimate the true population burden of STIs and how the STIs relate to
HIV. To do this, the country would need special studies to establish:





how many STI patients seek care from government or private health
facilities
how many seek STI care from other providers (for example, private
clinics, traditional medicine or pharmacies) or medicate themselves
which organisms are causing specific STI syndromes
which medications should be used to treat the different STIs
what behaviours are contributing to the spread of STIs.
Small group
discussion
Get into small groups to discuss these questions.
1. What are the most common STIs in your country?
2. Describe the current ongoing surveillance for STIs in your country?
3. How does the STI surveillance system in your country relate to the
HIV/AIDS surveillance systems that currently exist?
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An example
Reports of STI case reporting from Cariba. Assume that the population
size has not changed between 2000 and 2003.
Table 6.4. Reports of STI case reporting from Cariba.
STI condition
2000
2001
2002
Male urethral discharge
2 529
28 95
2 978
Male non-vesicular genital ulcer
642
783
749
Female non-vesicular genital ulcer
534
697
630
2003
2 985
769
690
Look at the STI data provided in the table.
a. What do the data suggest about the trends in the incidence and prevalence
of these conditions in Cariba?
b. What do these data suggest about trends in HIV risk behaviours?
c. What additional data would you be interested in reviewing to assess
burden of STI infection and incidence of STI infection in the province,
and why would you be interested?
Components of STI Surveillance Systems – in detail
Universal STI Reporting
Types of
reports used
In universal reporting, minimal data elements about STIs are collected
from all health facilities in the country. The minimum data include
information such as STI syndrome or aetiology by age group and gender.
Advantages and
disadvantages
The advantages and disadvantages of universal reporting for STIs are
outlined in Table 6.5
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Table 6.5. Advantages and disadvantages of universal STI reporting.
Advantages
Disadvantages
 It is the most readily
available source of STI
surveillance data.
 It provides data that are easy
to collect from health
facilities.
 It provides data on the
burden of STIs at the health
facility level, important for
planning health services.
 When consistent, it can be
used to track populationlevel STIs trends.
 It is based on recognition of symptoms and thus
provides a poor assessment of the true disease
burden among women (compared with men,
STIs are more often asymptomatic in women).
 It does not provide a direct estimate of the
population burden of STIs because people with
asymptomatic infection do not realise they are
infected, so they do not seek care.
 It is affected by fluctuations in health-seeking
behaviours of the population not related to the
burden of disease (for example, availability of
drugs or introduction of user fees at clinics).
Discussing
the table
Look at Table 6.5 and answer the following questions:
a. Why does universal reporting provide poor assessment of disease
burden among women?
b. Does universal reporting provide a direct estimate of the population
burden of STIs? Why or why not?
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Prevalence Assessment and Monitoring
Definition
and terms
Here are some of the terms used in prevalence assessment and monitoring:

Prevalence of a disease or infection—the proportion of people in a
population who have the disease or infection at a specified time.

Prevalence monitoring—following prevalence trends over time to see
if they are increasing or decreasing.

STI prevalence assessment and monitoring—using surveys to
determine what percentage or how many people have STIs when
compared to the total population.
Prevalence assessment is a major component of STI surveillance. This
core surveillance function is similar to HIV sero-prevalence surveys, and
includes collecting blood or urine for identification of STIs as well as
basic demographic information about the person tested.
Information obtained through prevalence assessments can be used to
understand which groups are at greater risk for infection or resistance.
Assessments determine demographic information about populations at
risk. This information is used to describe a population. When prevalence
and trends are identified, appropriate treatment can be planned.
Prevalence assessments are usually planned at the national level as one of
the following:



part of a combined STI/HIV behavioural survey
part of a national HIV sero-prevalence survey
a standalone project.
The STIs that can be included in surveys are:





syphilis
gonorrhoea
chlamydia
Herpes simplex virus
hepatitis B
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Objectives of
assessment and
monitoring
The main purposes of STI prevalence assessment and monitoring are to:


identify population sub-groups with high prevalence of STIs
monitor trends in STI prevalence among defined populations.
Prevalence assessments are used in various situations:



In prevalence assessment and monitoring, interventions (such as
screening and treatment) are part of the surveillance activity.
Prevalence assessment may also be performed as part of a study. These
studies are designed to obtain data for programme planning.
Often, STI prevalence is monitored in routinely screened, defined
populations. For example, women are routinely screened for syphilis
during antenatal care or delivery. The main purpose of screening at
antenatal clinics is detection and treatment of STIs. Determination of
prevalence is not the main goal.
Programme
planning
STI prevalence data are of great use in HIV and STI programme planning,
management and evaluation. They are used to:





develop national estimates of STIs
identify population sub-groups at high risk for HIV infection (as
evidenced by high rates of STIs)
guide funding and resource allocation for STI and HIV prevention
programmes
monitor effectiveness of STIs and HIV prevention programmes
intervene in the transmission of STIs through screening and treatment.
Prevalence trends may be altered by changes in the population being
screened for several reasons:




different types of clinics; for example, an STI clinic may get different
results than a clinic serving the general population
change in the population's health-seeking behaviour
change in criteria used to select persons for screening
change in diagnostic tests, especially for chlamydia, which often vary
in sensitivity and specificity.
Any changes should be recorded and taken into account in the
interpretation of trend data.
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Assessing STI Syndrome Aetiologies
Determining the micro-organisms that cause genital discharge and genital
ulcer disease is an important STI surveillance activity. This assessment of
aetiologies of STI syndromes is especially important in countries where
STI syndromic management and case reporting are usually performed.
Knowing the organisms that account for the STI syndromes allows the STI
control programmes to recommend effective treatment.
The national HIV/STI control programme typically organises and carries
out an STI syndrome aetiology assessment. These surveys are conducted
to assess the relative contributions of the major STI pathogens, such as:


the syndrome of genital discharge (urethral discharge in men and
vaginal/endocervical discharge in women, caused by gonorrhoea,
chlamydia and others)
the syndrome of genital ulcer disease in men and women (syphilis,
chancroid and HSV-2).
Syndrome aetiologies should be reassessed every two to three years, or
more frequently if the need arises. For example, if there is a new outbreak
of genital ulcer disease, your reassessment of which micro-organisms are
causing disease would happen earlier.
Objectives
The main purposes of assessing syndrome aetiologies are to:



provide data for guiding STI syndromic treatment
assist in the interpretation of syndromic case reports and the
assessment of disease burden due to specific pathogens
design or modify guidelines for treating urethral discharge and genital
ulcers.
Laboratory
requirements
A microbiologist experienced in STI diagnostic tests should develop
laboratory protocols for determining which organisms are causing the
symptoms. Laboratories should also have quality assurance and control
protocols in place.
The range of diagnostic tests that may be used is broad. Many new tests
are being developed. Selection of the test to use will depend upon local
availability of resources.
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Laboratory requirements, continued
Table 6.6, below, summarises the general types of laboratory tests that
may be used for assessing syndrome aetiologies:
Table 6.6 Laboratory tests for specific STI syndromes.
Syndrome
Corresponding laboratory tests
Genital discharge
 Microscopy (Gram stain of urethral discharge to
identify Gram-negative diplococci bacteria,
primarily N. gonorrhoeae)
 Gonorrhoea and chlamydia testing:
o culture for N. gonorrhoeae
o direct fluorescent antigen and enzyme-linked
immunoassay (EIA) for C. trachomatis
o amplified (such as PCR or strand
displacement amplification) and nonamplified nucleic-acid-based tests for both
pathogens
Genital ulcer disease
 Syphilis serologic testing (non-treponemal and
treponemal)
 Dark field, direct fluorescent antibody test for
syphilis
 Culture for H. ducreyi
 HSV-2 culture or antigen detection test
 Polymerase chain reaction (PCR) for T.
pallidum, H. ducreyi and HSV-2 available in
some settings
Discussing
the table
Looking at Table 6.6, answer the following questions:
a. For which syndrome is it appropriate to perform microscopy?
b. How would you test for syphilis in genital ulcer disease?
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Testing
procedures
Selection of populations for assessing syndrome aetiologies depends on
the number of cases available for examination at a single site. Syndrome
aetiologies should ideally be assessed in:




different types of populations
populations with high rates of disease
populations with low rates of disease
different geographic locations.
If your country has limited resources, begin with an assessment of genital
discharge and genital ulcer disease at a single specialised STI clinic. The
clinic should:


have well-trained personnel who can perform high-quality Gram stain
and microscopy
be able to perform syphilis serologic testing.
In many countries, reliable dark field microscopy is unavailable.
Collaborate with a well-equipped laboratory to assess the contribution of
chlamydia to urethral discharge. Further assess the contribution of
chancroid and herpes to genital ulcer disease. Also keep in mind that:


Syphilis serologic testing alone provides an incomplete assessment of
genital ulcer aetiology. This is because many patients with chancroid
and HSV-2 ulcers can have reactive syphilis serologic tests from
previously treated or untreated (latent) infections.
A substantial proportion (10%-30%) of patients with primary syphilis
will not yet have developed a serologic response to infection.
Sample size
The sample size depends on the specific aetiology and the expected
prevalence of pathogens.
A minimum sample size of 50 or 100 specimens from consecutive patients
with the specified syndrome (or other type of systematic sample) will
provide adequate information for useful analyses.
Analysis
It is important to analyse STI data separately for each specific disease
rather than reporting findings together. For example, cases of gonorrhoea
should be analysed separately from cases of syphilis. The frequency of the
various STI and risk behaviours should then be calculated and analysed
by:
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HIV/STI Surveillance for CAREC Member Countries
Analysis, continued





gender
age group
geographic area
marital status
other relevant characteristics.
These tests should be anonymous, so there is no way to give results to
individual patients. But if for any reason these tests are conducted in such
a way that the results could be linked back to the individual, patients need
to be given results and treated.
Summary
Assessing syndrome aetiologies provides information on the relative
contributions of different pathogens to the main STI syndromes. This
guides STI syndromic treatment and assists in the interpretation of
syndromic case reports.
Behavioural and Biological Surveillance Surveys
Behavioural surveys of certain high-risk groups and of the general
population are an integral part of third-generation surveillance. They can
be combined with HIV sero-prevalence surveys.
Behavioural surveys can also be combined with STI prevalence surveys
done along with HIV testing. These combined STI/HIV behavioural
surveillance surveys collect data that compare patients’ high-risk
behaviour with the presence of STIs and HIV.
Behavioural
surveys
Behavioural surveys use questionnaires to examine the prevalence of
behaviours associated with HIV transmission. In these surveys, prevalence
is the number of people who have a certain behaviour (usually within a
specified time period) divided by the total number of people who
answered the question.
Behavioural surveys may be conducted as part of:
 national health and demographic surveys
 HIV behavioural surveillance or HIV sero-surveillance in high-risk
populations.
In behavioural surveys, you interview people about their sexual and other
high-risk behaviours that are associated with an elevated risk of STI or
HIV infection.
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Data elements
Use consistent data elements to determine risk behaviour. Use behavioural
survey questions, such as:





the number of sexual partners in the past three or 12 months
new sexual partners in the past three months
condom use at the last sexual intercourse with someone other than a
regular sexual partner
alcohol or drug use in the past 12 months
giving or receiving money for sex in the past 12 months.
When used with behavioural surveys, HIV and STI testing assess risk
behaviours and HIV and STI burden in high-risk and bridging
populations, as well as in the general population. Bridging populations
include people in high-risk groups who have sex with people of lower risk
in the general population. An example of this might be a female
commercial sex worker having sex with her boyfriend, who does not have
other high-risk behaviours.
Choosing STIs
for behavioural
surveys
When you are choosing which STI to test for in a combined STI/HIV and
behavioural survey, consider two things:
 the laboratory infrastructure development in the country
 the type of populations under study.
These assessments almost always include HIV testing.
Summary
Combined STI/HIV and behavioural surveys combine STI and HIV
prevalence assessments with behavioural surveys. These can be done in
the general population or in specific high-risk populations.
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Monitoring of Anti-Microbial Resistance of STI Pathogens
Why monitor
for resistance?
Drugs are routinely used to treat STI infections. This has led to increasing
rates of resistance. Resistance is the alteration of a pathogen that makes it
non-responsive to a particular anti-microbial agent. Simply put, the drug
being used no longer controls or eliminates the infection.
Resistance monitoring entails examining in the laboratory the
effectiveness of various anti-microbial agents in inhibiting the growth of
N. gonorrhoeae. In resistance monitoring, various concentrations of a
given anti-microbial agent are used to determine the minimum
concentration of that agent required to stop the organism from growing.
Depending on the concentration of the anti-microbial agent required to
inhibit growth, the organism can be classified as sensitive, intermediate or
resistant to a particular anti-microbial agent. Usually the organism is
checked for sensitivity against several different anti-microbials, often from
different classes.
As an example of how to monitor anti-microbial resistance, we will
discuss N. gonorrhoeae, a core component of STI surveillance. Resistance
monitoring is done to:


obtain the data necessary for developing and revising treatment
guidelines
detect newly emerging resistance.
It is also important to monitor N. gonorrhoeae to ensure that the
medication given to a patient with a gonococcal infection will cure the
infection. Effective treatment for gonorrhoea:




relieves the signs and symptoms and achieves microbiologic cure in
individual patients
prevents complications of pelvic inflammatory disease, chronic pelvic
pain and infertility in women
reduces the risk of HIV transmission by decreasing the presence of
white blood cells at the cervix and urethra
interrupts transmission of N. gonorrhoea.
Laboratory
requirements
Surveillance surveys for anti-microbial resistance of STI pathogens are
usually organised and conducted by the national HIV/STI control
programme. Sites are chosen that have healthcare facilities with well176
HIV/STI Surveillance for CAREC Member Countries
Laboratory requirements, continued
trained staff and laboratory expertise. Only selected sites will have the
capacity to conduct these types of surveillance activities.
In our example of monitoring N. gonorrhoeae and selecting anti-microbial
drugs for susceptibility testing, give priority to drugs commonly used for
treating gonococcal infections. A laboratory performing susceptibility
testing for N. gonorrhoeae should be able to accomplish the following
tasks:



culture the organism
perform biochemical and serologic confirmatory tests
perform minimum inhibitory concentration (MIC) agar dilution testing
of anti-microbial agents.
If the national reference laboratory does not have this capacity, it may
send isolates to a regional laboratory in another country for testing. An
isolate is a culture of bacteria or other cells.


Regional networks supported by WHO Collaborating Centres have
been established in several WHO regions to conduct anti-microbial
susceptibility testing for N. gonorrhoeae.
National reference laboratories are encouraged by WHO and UNAIDS
to participate in these centres' programmes of quality control and
assessment.
Frequency of
assessment
The assessment of anti-microbial resistance should be performed at least
once a year. When feasible, it is best to sample isolates on an ongoing
basis rather than during only one month or quarter per year. For example,
you can test 20 isolates per month at each sentinel site throughout the year.
Ongoing sampling makes it more likely that newly emerging resistance or
large changes in patterns of resistance will be detected early.
If trends in susceptibility are to be reliably monitored over time, variations
in the sentinel sites and sampling procedures should be minimised.
Summary
In view of the increasing rates of drug-resistant pathogens worldwide, it is
important for each country to monitor anti-microbial resistance in
Neisseria gonorrhoeae as a core component of STI surveillance.
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Section 6.2. Case Reporting, Data Management and Analysis
What this
section
is about
This section discusses sexually transmitted infection (STI) case reporting
and the information flow from health facilities through the sub-national
and national levels. It also reviews how to handle and analyse data.
Warm-up
questions
1. Match the STI data analysis parameter with its description by putting a
letter in each blank:
___ Analysis by place
___ Analysis by time
___ Analysis by person
a. Annual analysis of data could show an
annual trend of disease stratified by age
group and gender.
b. Analysis to detect if there are any trends
in case reports over time and
any inferences that can be made.
c. Analysis to provide information about
where clustering of disease might be
occurring and any inferences that can be
made.
2. True or false? Interpretation of STI trends should be made
independently from STI control programmes and the healthcare
system.
True
False
3. The national level should send STI summary reports to CAREC:
a. weekly
b. monthly
c. quarterly
d. annually
4. The national surveillance officers are responsible for:
a. checking data for inconsistencies
b. forwarding the results to the CAREC
c. following up with any health facility site that has missing or
inconsistent data
d. all of the above
5. List three ways to handle surveillance data so that patient
confidentiality is protected.
a.
b.
c.
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Introduction
What you
will learn
By the end of this section you should be able to:




describe how to plan your data collection and ensure confidentiality
describe the flow of data from health facilities to the district and the
national level
discuss the roles and responsibilities of each person involved in data
handling at each level
discuss the analysis of STI data.
Planning Your Data Collection
Data management
system
The national level should develop forms that all sites will use, as well as
co-ordinating training. A data management system should be developed at
the national level. Clear lines of reporting must be specified. The roles of
different workers, from the health facilities or sentinel sites through to the
national level, should be clearly defined. The data management system
should clearly explain how surveillance officers at both the sub-national
and national levels:



receive data
record data
check the data for completeness and consistency.
The national level should also design a method for the submission of the
reports by mail, regular direct pick-up from the sites, hand delivery, email, web-based submission and so on.
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Confidentiality
and security
All STI surveillance data must be handled to ensure patient confidentiality
(the protection of a patient’s personally identifying information) and
privacy.
Specifically:
 train staff who record, store and report surveillance data in the
importance of privacy and confidentiality of each patient’s data
 develop a written confidentiality policy for your surveillance and STI
control programme
 protect the integrity of STI data to ensure that they cannot be modified
 restrict access to the data either through use of passwords or restricted
access to computers
 lock all raw data in filing cabinets
 remove all personal identifying information before you report data
from one level to another
 keep patients’ personal identifying information only at the health
facility where it was collected, and do not allow unauthorised
disclosure of the personal identifying information.
Secure the data to protect it from harm or loss. Back up on an external
drive or CD-ROM every time data are added or edited.
 All STI data are confidential. The computer hardware should be
password-protected. Access should be limited to data entry personnel.
 Provide safe cabinets for storing hard copies of forms or registers.
 Lock the cabinets and restrict access to authorised personnel only.
Collecting Data
At the health
facilities
STI data collection should be an integral part of STI case management.
Everyone involved must have clearly defined duties.






The data collection process should interfere as little as possible with
the patient’s care and case management.
The data required should be data that are usually collected during case
management.
Data should be recorded on outpatient cards and transferred to the
patient register and standard reporting forms.
One individual needs to take responsibility for the actual reporting so
that reports are made on time.
A supervisor needs to ensure that the data are ready before they are
sent to the sub-national or national levels.
If personnel at sub-national levels have queries regarding the data,
these queries should be investigated and answered.
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Health facility
process
Here is the step-by-step process undertaken at the health facilities:
1. The doctor, midwife or nurse who diagnoses and provides care for the
patient:
 is responsible for identifying cases and recording medical and
demographic data onto patients’ charts
 must record the diagnoses according to standard case definitions to
help record officers or other staff to correctly tally at the end of the
month.
2. Depending on data requirements for reporting, the information may be
transferred directly to standard reporting forms from the patients’ charts.
3. STI cases should be tabulated on a regular basis, usually weekly. Data
entry clerks should be knowledgeable about the STI case definitions so
they can decide whether or not a particular patient meets the definition if
there is any question. The data entry clerk or other trained staff member:





abstracts data from the patients’ charts onto the patient register or
tally sheets
only includes patients presenting for the first visit with a current
episode of STI
makes separate entries for each syndrome (because some patients
will have more than one syndrome, this will result in a slight
overestimation of the total number of people with STIs, but will
yield a more reliable estimate of the magnitude and trends of the
individual syndromes)
transfers weekly totals from tally sheets, to standard
monthly/quarterly reporting forms, to sub-national or national level
makes a zero entry if there were no cases of a specific syndrome
during that month/quarter (do not leave the space blank) so the
district level will know the report is complete.
4. In some cases, the facility will include several clinics or sites. In that
case, a supervising doctor or nurse should:
 review weekly tallies from the health facility
 make their comments and have problems investigated before the
reports are submitted to sub-national/national authorities.
6. The final reporting forms should be copied. A copy should be sent to
the sub-national/national level while the original is kept on file at the
health facility.
Note: reports should be signed and dated by the reviewing supervisory
doctor/nurse at the facility.
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At the subnational
level
When a responsible officer at the sub-national level carefully reviews
facility forms, the quality of data received at the national level is high. Of
course, the better the data quality, the better the national level can make
decisions that will affect every health facility.
Sub-national-level data checking and editing should focus on:



checking for completeness of data
ensuring that all the variables indicated on the data collection forms
are appropriately filled
inconsistencies (for example, STIs in very young or old patients).
The reviewing surveillance officer should follow up with any health
facility site that has missing or inconsistent data. This should be done
before forwarding the forms to the regional or national level.
The officer combines the totals from all the reporting health facilities:




If computers and software are available, a data entry clerk will enter
data into a computerised database. If these resources are not available,
data entry is done at the national level.
A copy of the health facility reports should be kept at the sub-national
level.
The sub-national reporting forms should state the number of health
facilities with complete reports.
The original sub-national summary totals should be sent to the national
level, following clear reporting lines. Annex 4.2 provides a sample
form for this.
At the national
level
Check inconsistent data with the reporting sites. At the regional and
national levels (depending on your country resources), a trained data entry
clerk will enter reports into a computerised database. Then the data are
analysed.
Entering and Analysing Data
Data entry
Data should be double-entered (that is, entered twice) to avoid errors.
Alternatively, use software such as Epi Info™, which combines data entry
with validation.
Consider the following points regarding data entry (next page):
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Data entry, continued



Even if you use a data entry edit programme, data still need to be
carefully checked before analysis.
A simple frequency tabulation can be run after data are entered to recheck for implausible values.
Other ways to ensure correct data entry include:
o placing a tick or cross on forms once they have been entered
o printing out data in the form of a table to check whether the data
are logical (for example, women should not be reported with
urethral discharge).
Data analysis
In third-generation HIV surveillance, STI case reporting is used as a proxy
for HIV transmission. This is because STIs are transmitted in the same
way as sexually transmitted HIV and because programmes that target
prevention of sexually transmitted HIV should also prevent transmission
of STIs. Several STI syndromes quickly manifest in symptoms and can
represent recently acquired infection. These may indicate trends in HIV
incidence as well. Surveillance of the main STI syndromes—male urethral
discharge syndrome, female vaginal discharge, male non-vesicular genital
ulcer disease and female non-vesicular genital ulcer disease—can,
therefore, serve two functions:


indicate where HIV transmission could be occurring (for instance, a
geographical area or a population group)
indicate where HIV prevention programmes are failing (if the rates of
STIs are rising) or succeeding (if the rates of STIs are falling).
The analysis of STI data usually takes place at the national level at the
epidemiology or surveillance unit where analysis of surveillance data on
all priority diseases is done. Collaboration between this unit and the
HIV/STI control programme is essential. Analyse data by these categories
to identify the sites that are not reporting consistently:





reporting site
type of facility
district/parish/county
gender
age group
Also, analyse data separately for each syndrome (if syndromic case
reporting is conducted) or for each disease (if aetiologic case reporting is
conducted).
STI data analysis should generally focus on three parameters: person,
place or time. Table 6.7 explains these parameters.
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Type of
analysis
By person
By place
By time
Table 6.7. Types of STI data analysis.
Description
 annual analysis of data to show trends in specific
syndromes
 in the case of aetiologic surveillance, diseases stratified
by age group and gender
 analysis to provide information about where clustering
of disease might be occurring and any inferences that
can be made
 stratified analysis by region or geographical area to
show if there are significant differences between places
 analysis to detect if there are any trends in reports over
time and if any inferences can be made (for example,
incidence increasing or decreasing)
 data for a specific quarter should be compared with the
same quarter in the previous year
Discussing
the table
Looking at Table 6.7, answer the following questions:
a. Does analysis by person allow you to track STI trends in specific age
groups? How would this aid HIV prevention programmes?
b. Does analysis by place allow you to detect any trends in reports over
time? How would this aid HIV prevention programmes?
Interpreting
trends
Be careful when you are interpreting STI trends. Interpretation of trends
should not be made outside the context of STI control programmes or the
healthcare system. In order to accurately interpret STI trends, you must
think about the following factors:



factors related to health-seeking behaviour, such as opening of
additional healthcare facilities, availability or unavailability of
medications or introduction of user fees
factors affecting reporting practises, such as changes in staffing or
training of the staff handling case reporting and data
changes in case definitions or quality of services.
If there are unexpected fluctuations, officers at the national or regional
level should investigate by contacting the sites.
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Analysing universal
site data
The magnitude of STIs by category and trends should help in drawing
preliminary conclusions about the burden of STIs.
At all levels of analysis, the data should be clearly summarised in tables,
graphs or charts, so they are easily understood. In this way, trends or
patterns are identified.
In summary
Surveillance data collection occurs at the health facility level, while data
processing takes place at the sub-national and national levels. It is
extremely important to ensure patient confidentiality. STI data analysis
should generally focus on three parameters: person, place or time.
Summary
Important
points

If surveillance data show that STI transmission is occurring, then HIV
transmission is likely occurring as well.

World Health Organization estimates that 340 million new, curable
STI cases occurred globally in 1999. Of these, 69 million (20.3%)
occurred in the Caribbean.

There are two different ways to diagnose and manage STI cases. These
are syndromic diagnosis and reporting, and aetiologic diagnosis and
reporting. In syndromic diagnosis, four syndromes are used for STI
surveillance. In aetiologic diagnosis, an exact microbiologic diagnosis
is given (for example, gonorrhoea).

Diagnosis of STI syndromes should be based on standard case
definitions, which use readily identifiable and consistent clinical
criteria. Uniform case definitions should be used throughout the
country to enable comparability of the data arising from the reporting
systems.

Only curable STIs with acute onset and short duration, such as
gonorrhoea, chlamydia, chancroid, trichomoniasis, primary and
secondary syphilis, and the syndromes they cause are important as a
tool for assessing STI incidence and prevalence.
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Important points, continued

Some components of an STI surveillance system are more important
for surveillance purposes (for example, STI case or aggregate
reporting sentinel surveillance, and combined STI/HIV behavioural
surveillance surveys).

Other STI surveillance components are more important for STI control
programme activities. For example:
o assessing syndrome aetiologies
o anti-microbial resistance monitoring.

The most feasible STI surveillance system in the Caribbean is STI
universal reporting and or STI sentinel surveillance. The STI reporting
process involves healthcare providers reporting numbers of persons
with new episodes of STIs over a given time period to public health
authorities from the parish/county level up to the national level. In
universal STI reporting, minimum data on STI cases are collected
from all the health facilities in the country.

STI surveillance can occur through universal STI reporting, sentinel
STI surveillance, or a combination of the two.

At sentinel surveillance sites, more data on STI cases are recorded and
reported. Trends from these sites are used to infer trends of STIs in
other health facilities. The major advantage of this system is that
higher quality and more consistent information is obtained.

Sentinel surveillance produces higher quality and more consistent
surveillance data than universal reporting, at lower cost. However, you
cannot assume that sentinel surveillance data are representative of the
general population, while you can make that assumption with universal
reporting data.

In countries using the syndromic approach to STI treatment, it is
important to monitor the actual aetiologies of urethral discharge
syndrome in men, and genital ulcer diseases in men and women. These
findings are used to refine national STI treatment guidelines.

Prevalence assessment is the determination of prevalence of certain
STIs by laboratory testing among persons screened in defined
populations. Prevalence monitoring is the monitoring of trends in
prevalence over time.

Combined STI/HIV and behavioural surveys combine STI and HIV
prevalence assessments with behavioural surveys. These can be done
in the general population (as in DHS+) or in specific high-risk
populations.
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Small group
discussion
Get into small groups to discuss these questions.
1. Describe the system for forwarding STI surveillance reports from the
health facility level to the national level in your country. Describe
what happens to the forms at each level and indicate the responsible
officers.
2. What core data elements are required for reporting through the STI
universal reporting system?
Apply what
you’ve learned/
case study
Try this case study. We’ll discuss the answers in class.
You are the national STI surveillance officer for Cariba. You rely
primarily on syndromic surveillance using a universal reporting system.
You have noticed an increase in the number of reported cases of male nonvesicular genital ulcer disease in the St. James Parish, one of five districts
in the country.
Number of reported cases of male non-vesicular genital ulcer disease by
district and year, Cariba.
Parish
Year
1998
1999
2000
2001
2002
2003
40
42
38
54
45
38
St. Mary
60
70
72
84
65
58
Kingstown
47
50
42
40
41
39
Arima
53
87
76
95
107
197
St. James
49
49
36
72
65
48
Yotown
a. What are some possible causes of this increase?
Arima and Yotown, parishes that border St. James, are primarily rural
areas, whereas St. James has an urban centre with a recently refurbished
and expanded health centre.
b. Could these differences between the parishes account for the increase
in STI cases in St. James?
c. How would you investigate this?
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Apply what you’ve learned/case study, continued
You examine all syphilis tests done at the clinic for one month.
Demographic data, including parish of residence, are available. The table
below shows your findings:
Results of sentinel syphilis screening by parish of residence, Cariba.
Parish of
Positive
Total tested
Percentage
residence
syphilis tests
positive
10
60
Arima
25
150
St. James
3
80
Yotown
d. Calculate the prevalence by parish of residence. How could these data
be used for STI control? For HIV control?
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Annex 6.1. Caribbean Epidemiology Centre Quarterly STI
Reporting Form
YEAR …….…………………..……….. Quarter
REPORTING PERIOD:
1
2
3
4
DATE OF REPORTING:
STI prevalence rate in populations concluded during this period
among specific groups:
NAME OF COUNTRY:
UNIT/ PROGRAMME:
Study group:
Total number of STI cases reported during this
period:
Blood donors
Pregnant
women
MSM
%
%
%
Others (indicate) : Name:
SYNDROMES
AETIOLOGIES
AGE GROUPS
Sex
10 - 14
Urethral discharge
(Males only)
Gonorrhoea
Chlamydia
Non-Specific Urethritis (NSU)
Unknown
Syphilis
LGV
Genital ulcer
(Males & females)
HSV
Chancroid
Unknown
Vaginal discharge
(Females only)
Gonorrhoea
Chlamydia
Trichomonas
Bacterial Vaginosis
Others
Unknown
Syphilis
No syndrome, but
laboratory test
positive
(Males & females)
(serology positive)
HSV
Chlamydia
Other
FCSW
1
Name of STI :
15 –19
20 - 24
25 - 49
50+
%
%:
Age &/or
Sex2
unknown
TOTAL
M
M
M
M
M
F
M
F
M
F
M
F
M
F
F
F
F
F
F
F
M
F
M
F
M
F
M
F
TOTAL
INFANTS
Ophthalmia
Neonatorum
TOTAL
Gonorrhoea
Chlamydia
Other
Unknown
Congenital Syphilis
HSV: Herpes Simplex Virus Infections (Only the first episode should be reported)
LGV: Lymphogranuloma venereum
1
FCSW: Female Commercial Sex Workers
Indicate disease under study e.g. chlamydia, syphilis
2
MSM: Men who have Sex with Men
Count based on persons to avoid duplication (for example if an individual’s
age and gender are not known, they must be only counted once)
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Annex 6.2. CAREC Surveillance Case Definitions
for Sexually Transmitted Infections (STIs)
Definition of STI, by Syndromes
BACTERIAL VAGINOSIS
Bacterial vaginosis, previously known as nonspecific vaginitis or Gardnerella vaginitis,
is the most common cause of vaginal discharge. This clinical syndrome is now
recognised as a polymicrobial superficial vaginal infection involving a loss of the normal
lactobacilli and an overgrowth of anaerobes. While commonly found in increased
numbers in women with bacterial vaginosis, G. vaginalis is not invariably present. G.
vaginalis has been reported in 16 to 42 percent of women with no signs or symptoms of
vaginitis.
CONFIRMED CASE
 Clinically confirmed: At least three of these criteria must be present for diagnosis
o Homogeneous vaginal discharge (colour and amount may vary)
o Presence of clue cells (greater than 20%)
o Amine (fishy) odour when potassium hydroxide solution is added to
vaginal secretions (commonly called the "whiff test")
o Vaginal pH greater than 4.5
o Absence of the normal vaginal lactobacilli.
GENITAL ULCER SYNDROME
This clinical syndrome is an indicator of sexually transmitted infection.
CONFIRMED CASE
 Clinically confirmed: Any male or female with ulcers or vesicles present in the
anogenital region: scrotum, penis, vulva, vagina, cervix, perianal area, or inner
thighs with or without regional lymphadenopathy.
LYMOHOGRANULOMA VENEREUM
Infection with L1, L2, or L3 serovars of Chlamydia trachomatis is sexually transmitted
and may result in a Genital Ulcer Syndrome.
CONFIRMED CASE
 Laboratory confirmed: a case of Genital Ulcer Syndrome (see case definition)
with isolation of C. trachomatis, serotype L1, L2, or L3 from a clinical specimen
by cell culture or direct antigen, PCR or LCR methods from a genital ulcer.
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OPHTALMIA NEONATORUM
This clinical syndrome without specific aetiological laboratory diagnosis may be an
indicator of sexually transmitted infections among childbearing females.
CONFIRMED CASE
 Clinically confirmed: Any infant with acute redness and swelling of conjunctiva
of one or both eyes, with purulent discharge in the first month of life following
vaginal delivery.
URETHRAL DISCHARGE (GENITAL DISCHARGE SYNDROME)
This clinical syndrome is an indicator of sexually transmitted infection.
CONFIRMED CASE
 Clinically confirmed: Any male with urethral discharge that is cloudy or opaque,
viscous or sticky, appearing at the urethral meatus spontaneously or after milking
the urethra.
VAGINAL DISCHARGE (GENITAL DISCHARGE SYNDROME)
This clinical syndrome is an indicator of sexually transmitted infection.
CONFIRMED CASE
 Clinically confirmed: Any female with mucopurulent (yellowish), exudative
endocervical discharge present on speculum examination.
Definitions of STI, by Aetiology
CHANCROID
Infection with Haemophilus ducreyi is sexually transmitted and may result clinically in a
Genital Ulcer Syndrome.
CONFIRMED CASE
 Laboratory confirmed case: A case of Genital Ulcer Syndrome (see case
definition) with isolation of H. ducreyi from a clinical specimen by culture,
antigen detection or DNA amplification.
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CHLAMYDIAL INFECTIONS
Infections caused by Chlamydia trachomatis can be sexually transmitted and may result
in urethritis, epididymitis, cervicitis, acute salpingitis (pelvic inflammatory disease),
proctitis, or other syndromes (see Lymphogranuloma Venereum). Infection may be
asymptomatic.
CONFIRMED CASE
 Laboratory confirmed: Detection of C. trachomatis by cell culture, direct
antigen, PCR or LCR methods from an intraurethral (male) or endocervical swab
(female).
CHLAMYDIAL INFECTIONS (NEONATAL)
Perinatal infections with Chlamydia trachomatis may result in Ophthalmia neonatorum,
and acute inflammatory condition of the conjunctiva among newborns. It could also
result in acute pneumonia among newborns and infants.
CONFIRMED CASE
Laboratory confirmed: a case of O. neonatorum (see case definition) with detection
of C. trachomatis by cell culture or direct antigen method from conjunctival
exudate or pseudomembrane.
GONOCOCCAL INFECTION (NEONATAL)
Perinatal infection with Neisseria gonorrhoeae may result in Opthalmia neonatorum, an
acute inflammatory condition of the conjunctiva among newborns.
CONFIRMED CASE
 Laboratory confirmed: A case of O. neonaturum (see case definition) with
isolation of N. gonnorhoeae from an eye swab.
HERPES SIMPLEX VIRUS INFECTIONS (GENITAL)
Infection with herpes simplex virus (HSV) types 1 or 2 may be sexually transmitted and
may result in recurrent episodes of a Genital Ulcer Syndrome. Because of its chronic
evolvement, only an initial episode of genital herpes should be reported.
PROBABLE CASE
A Genital Ulcer Syndrome (see case definition) with clear vesicles on an erythematous
base in the anogenital area and no previous documentation of such an occurrence.
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CONFIRMED CASE
 Laboratory confirmed: A probable case with isolation of HSV1 or HSV2 from
clinical specimen by culture or DNA detection by multiplex PCR.
HIV INFECTION
CONFIRMED CASE
 Laboratory confirmed: The diagnosis of HIV infection is based on laboratory
confirmation using one or more of the following:
In adults and children over 18 months:
Repeatedly reactive screening tests for HIV antibody by an approved testing
algorithm (e.g., double enzyme linked assay (ELISA) followed by Western Blot if
necessary) in persons aged more than 18 months.
Direct identification of virus in host tissues by virus isolation through Culture or
Polymerase Chain Reaction: PCR or HIV antigen detection (p24 antigen).
In children younger than 18 months:
In cases of HIV positive mothers, their children may carry maternal antibodies for
up to 18 months. In order to make a definitive diagnosis of HIV infection, viral
material needs to be demonstrated by, for instance, a PCR test or p24Ag. Such a
test should be done at least twice, at one month and at four months of age. The
second PCR test should take place between four and six months of age.
In the absence of diagnostic facilities for these tests, HIV infection in infants born
to HIV positive mothers is defined as the persistence of HIV antibodies beyond the
age of 18 months. Antibody testing in the absence of breastfeeding should be
carried out every three to six months until two consecutive negative results or to
age 18 months, if infection is ruled out by two consecutive non-reactive antibody
tests.
In the special case that a non-reactive infant has been exposed to breastmilk of an
HIV positive mother, HIV testing of that child should take place three months after
breastfeeding is stopped.
SYPHILIS
Syphilis is a complex sexually transmitted infection with a highly variable clinical course
resulting from initial infection with Treponema palidum. Congenital syphilis may result
from untreated women becoming pregnant and infecting their offspring.
CONFIRMED CASE (PRIMARY SYPHILIS)
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SYPHILIS, CONTINUED

Laboratory confirmed: A case of Genital Ulcer Syndrome (see case definition)
with laboratory confirmation: Nontreponemal (VDRL/RPR) and treponemal
(MHATP/TPHA or FTA) reactive serology when no history of previous syphilis
or treponemal infection
OR
four-fold increase in titre over the last known non-treponemal (VDRL/RPR) test
OR
demonstration of Treponema pallidum from a chancre or in aspirated material
from a regional lymph node by dark field, fluorescent antibody, or equivalent
microscopic methods.
SUSPECTED CASE (SECONDARY SYPHILIS)
An individual with any of the following:
 localised or diffused
 mucocutaneous lesions
 generalised lymphadenopathy
 alopecia
 loss of eyelashes and lateral third of eyebrows, iritis, splenomegaly.
CONFIRMED CASE (SECONDARY SYPHILIS)
 Laboratory confirmed: A confirmed case is a suspected case with laboratory
confirmation: Non-treponemal (VDRL/RPR) and (MHATP/TPHA or FTA)
reactive serology
OR
Non-treponemal (VDRL/RPR) serology titre greater than or equal to 1:8
OR
demonstration of Treponema pallidum from a chancre or in aspirated material
from a regional lymph node by darkfield, fluorescent antibody, or equivalent
microscopic methods.
CONFIRMED CASE (OTHER SYPHILIS: SEROLOGICAL SYPHILIS)
 Laboratory confirmed: An individual who does not meet the criteria for
primary, secondary or congenital syphilis with the following diagnosis laboratory
confirmation: Non-treponemal (VDRL/RPR) and/or treponemal (MHATP/TPHA
or FTA) reactive serology with no known previous treatment for syphilis
OR
four-fold rise in non-treponemal (VDRL/RPR) serology titre.
LATENT AND TERTIARY SYPHILIS
Their diagnosis is done occasionally through mother-to-child transmission of syphilis and
generally through clinical manifestations, such as cardiovascular abnormalities (thoracic
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SYPHILIS, CONTINUED
aortic aneurysm and aortic insufficiency), skin lesions (localised gumma formation) and
neurologic manifestations, (general paresis, tabes dorsalis and focal neurologic signs) as
well as skeleton, testis and cartilage dysfunction and abnormalities.
PROBABLE CASE (CONGENITAL SYPHILIS)
An infant (live or still birth) born to a woman with a diagnosis of syphilis who:
 is untreated OR
 does not have documentation of treatment OR
 did not have an expected decrease in serology titre after treatment OR
 was treated one month or less before delivery OR
 was treated with non-penicillin therapy OR
 an infant (live or stillbirth) with clinical evidence of congenital syphilis on
physical examination or long bones X-ray OR
 an infant with a non-treponemal (VDRL/RPR) serology titre which is four-fold
greater than the mother’s titre
PROBABLE CASE (CONGENITAL SYPHILIS)
 Laboratory confirmed: A probable case with Laboratory confirmation:
Demonstration of Treponema pallidum by darkfield microscopy, fluorescent
antibody, or other specific stains from nasal discharges or skin lesions, or in
placental, umbilical cord or autopsy material of a neonate.
TRICHOMONAS VAGINALIS
Although there are more than 100 species of Trichomonas, only three of them affect
humans. Trichomonas vaginalis is the species responsible for urogenital tract infection.
Trichomonas vaginalis is the most frequent parasitic sexually transmitted infection
among women. The infection among men is generally asymptomatic. Infection with
Trichomonas may result in genital discharge syndrome.
CONFIRMED CASE
Laboratory confirmed: The diagnosis is made by direct microscopic observation of
motile characteristic parasites. The preparation consists of adding physiological saline
solution to a swab of vaginal secretions and analysing under a light microscope (100x).
Other methods of identification exist, such as culture (Diamond’s modified medium);
antigen detection (Direct Enzyme Immunoassay and Fluorescent Direct Immunoassay);
and the DNA detection by PCR. These expensive methods should be used only in
aetiologic surveys to determine pathogens circulating and to adapt national STI treatment
algorithms.
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Unit 7
Confidentiality and Data Security
Overview
What this
unit is about
Persons with HIV infection and persons and groups at increased risk for
HIV are vulnerable to a number of social, legal and physical harms.
Because of this, surveillance and special studies need to address a unique
set of ethical issues. This unit discusses those issues and facilitates a more
uniform approach to common ethical issues relating to HIV surveillance.
Warm-up
questions
1. True or false? Because of the urgent need to treat and prevent HIV
infection, issues such as confidentiality and informed consent do not
need to be addressed.
True
False
2. The principle of ‘beneficence’ refers to minimising risk to individuals
in the areas of:
a. physical risk
b. psychological harm
c. stigmatisation
d. all of the above
3. True or false? Providing large monetary or in-kind incentives is an
ethical way to ensure that more participants agree to give informed
consent.
True
False
4. True or false? In low-level epidemics, information about HIV infection
in high-risk or marginalised groups should be widely publicised to
prevent further spread of the disease.
True
False
5. The process by which potential threats to confidentiality are discussed
with subjects before they decide to participate is known as
___________________.
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Warm-up questions, continued
6. List three potential risks to participants in a behavioural surveillance
study.
a.
b.
c.
7. True or false? Surveillance is an academic exercise. Investigators
should not become involved as advocates in the communities in which
they work.
True
False
8. List two types of programmes or services that can be developed as a
result of surveillance activities.
a.
b.
9. If _______________ about HIV infection is violated, subjects may
suffer discrimination and stigmatisation. They may even be subject to
criminal charges.
a.
b.
c.
d.
privacy
informed consent
confidentiality
beneficence
10. True or false? In unlinked anonymous testing, informed consent is not
obtained. Some information identifying the sample with the patient
remains.
True
False
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Introduction
What you
will learn
By the end of this unit you should be able to:
 discuss the ethical principles of respect for persons, beneficence, and
justice in the context of HIV surveillance of high-risk populations
 identify potential harms caused by HIV and behavioural surveillance
 identify potential benefits resulting from HIV and behavioural
surveillance
 describe issues of confidentiality and how they relate to HIV
surveillance.
Addressing Ethical Issues
What are
the issues?
People and groups with increased risk for HIV infection are vulnerable to
a number of social, legal and physical harms. Because of this vulnerability
and the stigma (mark of disgrace or shame) attached to the disease,
surveillance and special studies need to address a unique set of ethical
issues. These include:
 elevated risk of harm for people in high-risk populations, especially if
their behaviour is illegal or stigmatised
 confidentiality (protecting personal information of a study participant)
 informed consent (the permission granted by a participant after she has
been informed about the details of the study)
 access to prevention and care services.
Three ethical
principles
Ethical issues don’t always have clear right or wrong answers, but three
universally accepted ethical principles exist.
1. Respect for persons requires public health officers and biomedical
research investigators to see study subjects not just as passive sources of
data, but as persons whose rights and welfare must be protected.
2. Beneficence refers to balancing the benefits and risks to individuals.
This includes not only physical risk, but also risk of psychological harm
and stigmatisation.
3. Justice means that risks and benefits from studies should be distributed
fairly and evenly in populations.
These ethical principles should be applied within the context of public
health surveillance for HIV.
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Confidentiality
and data security
HIV surveillance is the joint responsibility of many participants in the
healthcare system. Among the participants are national and sub-national
surveillance programmes; public and private institutions providing
clinical, counselling, and laboratory services; individual healthcare
providers; persons at risk for HIV infection; and persons with HIV
infection. The ability of surveillance programmes to collect, store, use and
transmit sensitive HIV case information in a secure and confidential
manner is central to the programme's acceptability and success.
The dynamic nature of information technology is a critical consideration
in developing security policies and procedures that will be used to meet
the requirements and standards described in these guidelines. The HIV
surveillance system was created before the development of technologies
such as laptops, portable external storage devices and the
internet, all of which can be potential sources for security breaches. Now,
all Ministries of Health should routinely assess the changing world of
computer technology and adjust security policies and procedures to protect
against potential new risks.
Unique Identifiers—Names versus Codes: Balancing Risks and
Benefits
Ethical
considerations
In many regions and countries, especially those with low-level and
concentrated (the epidemic state in which HIV has spread to a high level
in a defined sup-population, but is not well-established in the general
population) epidemics, the central surveillance activity is reporting cases
of HIV infection or persons diagnosed with AIDS. Nations may consider
implementing or modifying their surveillance HIV reporting systems. To
do so, they must decide whether or not such systems should employ
names, unique identifiers or anonymous codes. The UNAIDS guidelines
for public health and HIV surveillance ask you to consider the following
questions:

Who will be required to report? What clinical information and
personal identifiers will they report? To whom will they report?

How will the proposed system contribute to a more accurate
characterisation of the HIV/AIDS epidemic?
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Ethical considerations, continued

What is known about the completeness of reporting for other notifiable
conditions, including those that bear some stigma? How can such

experience be used to anticipate the willingness to cooperate on the
part of those who will be required to report?

Given the limits of all reporting systems (such as error rates and
failures to report), how will data derived from the proposed reporting
system be merged with those derived from other sources, such as
blinded sero-prevalence studies, to provide the most accurate
epidemiological picture that is achievable given the available
resources?
Fear of
stigmatisation
Infected persons in the general population and high-risk groups have a
legitimate fear of the reaction of the larger society based on past reactions.
These groups may include:





sex workers
injection drug users
prisoners
mobile populations
men who have sex with men.
If people fear information about their behaviour or their HIV status will be
used against them, they will either try to confuse investigators or refuse to
participate in monitoring studies. Successful surveillance in marginalised
populations depends on minimising participation bias by assuring:



informed consent
absolute confidentiality
thoughtful plans about how data generated will be used and
disseminated.
Discussion
What are three ways someone might be harmed if their HIV-positive
status becomes known?
a.
b.
c.
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Low-level and
concentrated
epidemic
considerations
One of the greatest challenges for surveillance in low-level and
concentrated epidemics is gaining access to high-risk groups to track
behaviour and infection. High-risk group members are very often
marginalised. Sometimes their behaviour is illegal.
An effective surveillance system requires that populations with elevated
incidence or prevalence of HIV be identified, then be accessible for:



regular monitoring of behaviour
risk markers
HIV infection.
In high-risk populations, many successful surveillance efforts focus on
clinics and educational programmes designed to meet the needs of the
people most vulnerable to HIV and its impact. These clinics provide
services to the high-risk population. In doing so, they provide a sentinel
site where sero-surveillance can be conducted.
Where sentinel sites do not exist, community members may advise and
participate in designing and carrying out cross-sectional biological and
behavioural surveys. Such efforts have been invaluable to successful
surveillance in the past.
In low-level epidemics, give careful consideration to whether or not to
publicise information about HIV infection and related behaviour of
marginalised groups to a wider audience. Experience has shown that in the
early stages of the epidemic, the general public’s reaction to information
about HIV infection in high-risk behaviour populations may be to call for
restrictive and prohibitive measures. Such measures simply drive risk
behaviour further underground, making prevention and care programmes
more difficult, which encourages the spread of the virus.
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Low-level and concentrated epidemic considerations, continued
Table 6.1 describes some of the potential harms caused by HIV
surveillance.
Table 6.1. Potential harms caused by HIV surveillance.
Type of Harm
Result
 public attack
 spousal/partner abuse
Physical
 domestic violence
Legal
Social







arrest
prosecution (especially with highrisk populations)
disclosure to family
workplace discrimination
loss of employment
isolation
loss of healthcare services
Discussing
the table
Examine Table 6.1 and answer the following questions:
a. What are two types of social harm that HIV surveillance may
accidentally cause?
b. Arrest is classified as which type of harm?
Generalised
epidemic
considerations
In surveillance of generalised epidemics, there is less focus on highestrisk populations, such as sex workers. In countries where monitoring is
done primarily through anonymous unlinked sero-surveillance activities,
risks to individuals are typically low.
Given the stigmatised nature of HIV infection in many countries, risk of
social discrimination and violence are quite real. Case reporting or surveys
and programmatic activities, such as voluntary counselling and testing,
may diagnose individuals with HIV infection and give them their results.
Individuals may disclose these results themselves or be identified during
programme activities. This may put them at risk for social harm and
violence from spouses, sexual partners or others. Surveillance activities
must protect data that individually identifies infected patients. Great care
must be taken to protect those data from public release.
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Generalised epidemic considerations, continued
More subtle is the risk of labelling certain sub-groups within the general
population, such as members of a particular racial or ethnic group who
have increased rates of HIV infection. This can lead to discrimination,
stigmatisation and other forms of harm. Take care to avoid inadvertently
stigmatising groups or sub-regions.
Benefits
Participating in surveillance holds benefits to society as a whole,
especially to highly impacted populations and HIV-infected individuals.
Surveillance is not an academic exercise. It is intended to be used as part
of a comprehensive programme to prevent and treat HIV. Participating
investigators often become advocates for additional prevention and
treatment services for the communities they are surveying.
Discussion
What are three benefits of HIV and behavioural surveillance for your
country?
a.
b.
c.
Potential
benefits of HIV
surveillance
HIV surveillance has numerous potential benefits to a community,
including:






guiding HIV prevention and care programmes
guiding STI and other services
raising public awareness of and sympathy for burden of disease in the
population
reducing stigma and effecting social change, especially around HIV
infection
special situations for certain high-risk populations, such as STI clinics
specifically for sex workers or men who have sex with men
HIV treatment services for prisoners.
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Confidentiality
Why it is
important
Confidentiality protects subjects from adverse consequences that may
arise if their personal information is known, such as their:


HIV positive status
sexual preference.
If confidentiality about HIV infection is violated, subjects may suffer
discrimination, stigma or arrest. Public health officers must maintain the
confidentiality of each individual’s records to guard against inadvertent
disclosure.
Laws and
confidentiality
Much of HIV surveillance entails special studies. In some countries, laws
may exist that protect individually identified research results from
discovery during legal proceedings. This is done to encourage
participation in high-risk behaviour research. Be aware of the particular
provisions in the laws of your country that may:



complicate participation by certain individuals; for example, the age of
legal adulthood may affect results from female sex workers under a
certain age
require reporting of individuals with HIV infection
minimise risk to participants, such as those that protect study results
from discovery.
Discuss potential threats to confidentiality with participants, as well as
measures that you will take to minimise them. This is part of the informed
consent process.
Guidelines for Confidentiality and Data Security
The following guidelines on confidentiality and data security have been
adapted from The CDC HIV Surveillance Programme Technical Guidance
for HIV/AIDS Surveillance Programmes, Volume III: Security and
Confidentiality Guidelines, 2006.
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Guiding Principles
The five guiding principles listed below are the backbone upon which all
programme requirements and security considerations have been built.
Guiding Principle 1
HIV surveillance information and data will be maintained in a physically
secure environment. Refer to sections related to ‘Physical Security’ and
‘Removable and External Storage Devices.’
Guiding Principle 2
Electronic HIV surveillance data will be held in a technically secure
environment, with the number of data repositories and individuals
permitted access kept to a minimum. Operational security procedures will
be implemented and documented to minimise the number of staff who
have access to personal identifiers and to minimise the number of
locations where personal identifiers are stored. Refer to sections ‘Policies,’
‘Training,’ ‘Data Security,’ ‘Access Control,’ ‘Laptops and Portable
Devices,’ and ‘Removable and External Storage Devices.’
Guiding Principle 3
Individual surveillance staff members and persons authorised to access
case-specific information will be responsible for protecting confidential
HIV surveillance information and data. Refer to sections
‘Responsibilities,’ ‘Training,’ and ‘Removable and External Storage
Devices.’
Guiding Principle 4
Security breaches of HIV surveillance information or data will be
investigated thoroughly, and sanctions imposed as appropriate. Refer to
the section on ‘Security Breaches.’
Guiding Principle 5
Security practises and written policies will be continuously reviewed,
assessed, and as necessary, changed to improve the protection of
confidential HIV surveillance information and data. Refer to the sections
on ‘Policies’ and ‘Security and Confidentiality Programme Requirement
Checklist.’
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Policies
Requirement 1
Policies must be in writing. Requirement 1 relates to Guiding Principle 2
(GP-2).
Requirement 2
A policy must name the individual who is the Overall Responsible Party
(ORP) for the security system. (GP-2)
The rationale is to increase accountability and help ensure that the
individual knows his/her responsibilities as ORP.
Requirement 3
A policy must describe methods for the review of security practises for
HIV surveillance data. Included in the policy should be a requirement for
an ongoing review of evolving technology to ensure that data remain
secure. (GP-5)
Requirement 4
Access to and uses of surveillance information or data must be defined in
a data release policy. (GP-2)
Requirement 5
A policy must incorporate provisions to protect against public access to
raw data or data tables that include small denominator populations that
could be indirectly identifying. (GP-2)
Data release policies outline the types of data that can be released and who
is authorised to receive the data. For example, when matching HIV cases
to cases in other data stores (e.g., TB, STI, or vital statistics), the policy
should specify what the purpose is, how this is done, who performs the
matching, what results are released, how the results should be stored, and
who receives the results.
This policy establishes the rules to be implemented to ensure that
information is allowed to flow within the information system and across
system boundaries only as authorised. Data release, by definition, suggests
that information about an HIV-infected individual is available for
distribution. A data release policy has to balance the inherent purpose of
HIV surveillance data with the confidentiality of any HIV-infected
individual reported for surveillance purposes. Therefore, any HIV
surveillance data release policy must be written with two questions in
mind. First, which data elements can be released about any case patient
that would not identify the individual if pieced together? Second, what
purposes are consistent with the reasons for which the data were originally
collected?
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Requirement 5, continued
With regard to the first question, certain information containing patientidentifying data elements (including elements such as the patient's name,
address, and social security number) may never be released for public
distribution. Care must also be taken to ensure that information released
cannot be linked with other databases containing additional information
that can be used to identify someone. However, in developing a data
release policy, state and local HIV surveillance programmes should be
aware that several data elements that are not inherently identifying could
be linked together to identify an individual. For example, when releasing
data on a community with relatively few members of a racial/ethnic group
(e.g., Carib Indians), a risk factor group (e.g., persons with haemophilia),
or an age group (e.g., >50 years old or specifying the date of birth or
death), surveillance staff should be careful that release of aggregate data
on the distribution of HIV-infected individuals by these categories could
not suggest the identity of an individual. Time periods also need to be
considered when developing a data release policy. Output from cases
reported cumulatively (since 1981) better hides any individual's identity
than output from cases reported within the past 12 months.
Therefore, care should be taken in deciding how both the numerator and
the denominator are defined when developing a data release policy.
Care should also be taken in graphic presentation of data. For example,
geographic information systems (GIS) allow for relatively accurate dot
mapping of observations. Care must be taken that graphic (like numeric)
presentation of data cannot permit the identification of any individual by
noting pinpoint observations of HIV cases at, for example, the county,
district, parish or enumeration district level. Other considerations in
developing data release policies include the need for national surveillance
programmes to ensure that their data release policies are consistent with
national confidentiality laws, and to include clear definitions of terms used
in the data release policy (e.g., personal identifier, population size, and
time period). For a complete discussion of this issue, refer to Unit 8,
Analysis, Interpretation, and Dissemination of HIV Surveillance Data.
The second issue that should guide the development of a data release
policy is to consider the purpose for which the data were originally
collected. No HIV surveillance information that could be used to identify
an individual should be available to anyone for non-public-health
purposes. Examples include the release of individual-level data to the
public; to parties involved in civil, criminal, or administrative litigation;
for commercial purposes; or to non-public health agencies of the national
government.
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Requirement 5, continued
Surveillance data are collected to monitor trends in the epidemic on a
population-based level. However, some national surveillance programmes
may choose to share individual case reports with prevention and care
programmes to initiate referrals to services. Additionally, some
surveillance programmes use surveillance data to initiate follow up for
supplemental public health research. Programmes that choose to establish
these linkages should do so without compromising the quality or security
of the surveillance system and should establish principles and procedures
for such practises in collaboration with providers and community partners.
Programmes that receive surveillance information should be subject to the
same penalties for unauthorised disclosure and must maintain the data in a
secure and confidential manner consistent with these guidelines.
Additionally, activities deemed to be research should get appropriate
human subjects approvals consistent with the country’s Ministry of Health
procedures. A discussion on using HIV surveillance data to initiate
referrals to prevention or treatment services is available in the document
Integrating HIV and AIDS Surveillance: A Resource Manual for
Surveillance Co-ordinators - Toolkit 5, Using HIV Surveillance Data to
Document Need and Initiate Referrals, found in Attachment G.
Attachment G can be found as an annex to this unit (see Annex 7.4).
Several other CDC resources and guidance documents are available online
to inform local discussions, including HIV Partner Counseling and
Referral Services: Guidance, HIV Prevention Case Management:
Guidance, resources on evaluation of HIV prevention programmes, and
more at: http://www.cdc.gov/hiv/pubs/guidelines.htm.
Requirement 6
Policies must be readily accessible by any staff having access to
confidential surveillance information or data at the central level and, if
applicable, at non-central sites. (GP-2)
As security questions arise in the course of surveillance activities, staff
must have ready access to the written policies. In most circumstances,
having a copy of the written policies located within the surveillance unit
would satisfy this requirement. Computer access to an electronic version
of the policies also may be acceptable. The key is for staff to have quick
access to policies as security and confidentiality questions arise.
Requirement 7
A policy must define the roles for all persons who are authorised to access
specific information and, for those staff outside the surveillance unit, what
standard procedures or methods will be used when access is determined to
be necessary. (GP-2)
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Requirement 8
All authorised staff must annually sign a confidentiality statement. Newly
hired staff must sign a confidentiality statement before access to
surveillance data is authorised. The new employee or newly authorised
staff must show the signed confidentiality statement to the grantor of
passwords and keys before passwords and keys are assigned. This
statement must indicate that the employee understands and agrees that
surveillance information or data will not be released to any individual not
granted access by the ORP. The original statement must be held in the
employee's personnel file and a copy given to the employee. (GP-2)
The policy should establish rules to ensure that only designated
individuals, under specified conditions, can:


access the information system (network logon, establish connection)
activate specific system commands (execute specific programmes and
procedures; create, view, or modify specific objects, programmes,
information system parameters).
The policy should include provisions for periodic review of access
authorisations. The policy could limit access to sensitive data to specified
hours and days of the week.
It should also state types of access needed, which could be linked to roles
defined for those with access. For example, epidemiologists may have
access to data across programmes that do not include identifiers.
Additionally, the policy should cover restrictions on access to the public
internet or email applications while accessing surveillance information.
Accidental transmission of data through either of these systems can be
avoided if they are never accessed simultaneously. Similarly, intruders can
be stymied in attempts to access information if it is not available while
that connection is open.
The policy should establish rules that ensure that group authenticators
(administrators, super users, etc.) are used for information system access
only when explicitly authorised and in conjunction with other
authenticators as appropriate. The policy should express similar rules for
individual users to ensure that access to identifiable data is allowed only
when explicitly authorised and in conjunction with other authenticators as
appropriate. The policy should document the process for assigning
authorisation and identify those with approval authority. Information
technology (IT) authorities granting access must obtain approval from the
ORP or designee before adding users, and they should maintain logs
documenting authorised users. The ORP or a designee should periodically
review user logs.
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Requirement 9
A policy must outline procedures for handling incoming mail to and
outgoing mail from the surveillance unit. The amount and sensitivity of
information contained in any one piece of mail must be kept to a
minimum. (GP-2)
The local mailing system and private carrier services are commonly used
for the movement of paper copies of information. There are many ways
that project areas can protect the confidentiality of an HIV-infected
individual when using the mail. For example, when surveillance staff and
providers are mailing information (e.g., case report forms) to the central
office, the policy could require that names and corresponding patient
numbers be sent in one envelope, while the remaining information
referenced by the corresponding patient number is sent in another
envelope. In addition, the terms 'HIV' or 'AIDS' should not necessarily be
included in either the mailing address or the return address. Mailing labels
or pre-addressed, stamped envelopes may be supplied to field staff and
providers to encourage this practise and to ensure the use of the correct
mailing address. Whenever confidential information is mailed, double
envelopes should be used, with the inside envelope clearly marked as
confidential. Because of the potential number of entries on a given paper
copy line list, programmes must exercise extreme caution if they find it
necessary to mail a paper list. Procedures for mailing lists, including the
amount and type of information permitted in any one mailing, must be
clearly outlined in the local policy. Two methods that surveillance
programmes currently employ to minimise risk when using the mail are:


to generate lists containing names without references to HIV or AIDS
to remove the names from the list and mail them separately from the
other sensitive information.
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Responsibilities
Requirement 10
The ORP must certify annually that all programme requirements are met.
(GP-2)
Requirement 11
Each member of the surveillance staff and all persons described in this
document who are authorised to access case-specific information must be
knowledgeable about the organisation's information security policies and
procedures. (GP-3)
Requirement 12
All staff who are authorised to access surveillance data must be
responsible for challenging those who are not authorised to access
surveillance data. (GP-3)
Many programmes consider the area of personal responsibility as a
potential area of concern because the actions of individuals within a
surveillance system are much more difficult to prescribe than operational
practises. This area represents one of the most important aspects of
holding data in a secure and confidential fashion, but the development of
objective criteria for assessing the degree of personal responsibility in
individual staff members may be difficult.
The programme requirements in this area may be evaluated objectively by
using a series of questions supervisors pose during the annual review of
security measures with staff. Input from staff can be obtained through such
questions as:




How often do you find the need to reference security policies or
standards?
Do you know who (by job position or name) should have access to the
secure surveillance area? How would you approach someone who was
entering the secured room if you believed that he or she was not
authorised access? Have you had any occasion to challenge such a
person?
To whom should security irregularities be reported? What are some
examples that would constitute an irregularity? What irregularities
would not need to be reported, if any?
Who else needs access to your computer for any reason? For example,
do family members or other staff members ever need to use your
workstation? Do you ever need to lend your key to a secured area to
another member of the health department staff for after-hours access to
the building? Who else knows your computer passwords?
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Requirement 13
All staff who are authorised to access surveillance data must be
individually responsible for protecting their own workstations, laptops or
other devices associated with confidential surveillance information or
data. This responsibility includes protecting keys, passwords and codes
that would allow access to confidential information or data. Staff must
take care not to infect surveillance software with computer viruses and not
to damage hardware through exposure to extreme heat or cold. (GP-3)
Surveillance staff should avoid situations that might allow unauthorised
persons to overhear or see confidential surveillance information. For
example, staff should never discuss confidential surveillance information
in the presence of persons who are not authorised to access the data.
Staff working with personal identifiers should have a workspace that does
not allow phone conversations to be overheard or paperwork and computer
monitors to be observed by unauthorised personnel. Ideally, only staff
with similar roles and authorisations would be permitted in a secure,
restricted area.
Training
Requirement 14
Every individual with access to surveillance data must attend security
training annually. The date of training must be documented in the
employee's personnel file. IT staff and contractors who require access to
data must undergo the same training as surveillance staff and sign the
same agreements. This requirement applies to any staff with access to
servers, workstations, backup devices, etc. (GP-3)
Security training is required for all new staff and must be repeated
annually thereafter, but the nature of this training may vary based on
country circumstances. For example, in areas of low HIV prevalence
where one surveillance person is on staff, if that person leaves before
training a replacement, the policy should indicate that training for data
security and confidentiality may be obtained in a neighbouring country
with a similar system. In other areas, new staff may be trained by the
surveillance co-ordinator one-on-one. In this instance, the policy should
document what types of information must be covered in such a session,
and provisions should be made to document that training was completed.
In areas of high HIV prevalence with larger numbers of staff, periodic
group training sessions may be more appropriate.
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Physical Security
Requirement 15
All physical locations containing electronic or paper copies of surveillance
data must be enclosed inside a locked, secured area with limited access.
Workspace for individuals with access to surveillance information must
also be within a secure locked area. (GP-1)
Requirement 16
Paper copies of surveillance information containing identifying
information must be housed inside locked file cabinets that are inside
locked rooms. (GP-1)
Requirement 17
Each member of the surveillance staff must shred documents containing
confidential information before disposing of them. (GP-3)
Maximum security practise dictates that HIV surveillance data be
maintained on a dedicated file server at only one site in each project area
where layers of security protections can be provided in a cost-effective
manner. This would obviate the need to duplicate expensive security
measures at multiple locations throughout the country.
Remote sites that need access to the central surveillance server for
surveillance activities could access the server through a secured method
(e.g., virtual private network [VPN], or authentication server) set up for
authorised users.
Some countries may decide to maintain the reporting system in more than
one site. If this is the case, every additional reporting system site in the
country must meet the same minimum security measures outlined in all of
the programme requirements.
Because the surveillance system can potentially identify any number of
persons with HIV infection within a country (or local jurisdiction if
surveillance is decentralised), particular attention to the security of
surveillance information is critical. The minimum security standard should
be to enclose the surveillance information inside a locked room, regardless
of the method used. Whether the reporting system resides on a server or
workstation, the computer containing the electronic surveillance data must
be enclosed inside a locked room. Only authorised surveillance personnel
should have access to the locked room. However, depending on the
numbers of HIV cases reported, the size and role of the surveillance staff,
community interest, and department resources, the ORP may decide that
other authorised health department staff need to work inside the
surveillance room.
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Requirement 17, continued
If the surveillance data reside on a server inside a locked room and not on
the hard drive of any individual workstation within the department, the
individual workstation (when logged off the network) does not pose a
great security risk and would not necessarily have to be located behind a
locked door to meet the minimum standard. LAN accounts with access to
identifying information in the reporting system should be limited only to
the workstations of those authorised.
LAN accounts also should be limited by time of day. (See Requirement 7.)
The use of cubicles in many office buildings can also present a challenge
to creation of a secure area. Cubicles with low walls make it difficult, even
within a secure area, to have a telephone conversation without others
hearing parts of the conversation.
Where necessary, higher cubicle walls with additional soundproofing can
be used. When cubicles are part of the office structure, cubicles where
sensitive information is viewed, discussed or is otherwise present should
be separated from cubicles where staff without access to this information
are located.
When electronic surveillance data with personal identifiers are stored
outside of a physically secure area (i.e., a locked room with limited
access), or if limited local resources require that surveillance data with
personal identifiers stored on a LAN be accessible to non-surveillance
staff, real-time encryption software must be employed. The additional
encryption software is designed to keep identifying information encrypted.
Should an unauthorised individual gain access to the surveillance
database, unencrypted identifying information cannot be viewed.
Encryption requirements would also apply to backup storage media, which
are frequently located off-site and could be managed by an outside vendor.
Paper copy data stores must be maintained in locked cabinets and inside
locked rooms. If a programme chooses to stop maintaining paper copies in
locked file cabinets inside locked rooms (e.g., because of age or volume),
the programme should destroy the completed forms after ensuring the data
are entered into the reporting system and after they are no longer needed
for follow-up. Before destroying the forms, a site may opt to digitally scan
forms for future reference. Digitised forms should be secured the same as
any other surveillance data.
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Requirement 17, continued
Requirement 15 does not apply to sub-sets of case report forms, such as
those that a surveillance staff member may hold in the course of an
investigation, but does apply to paper copy line lists or logbooks that list a
large number of reported cases by name in any one jurisdiction. Even if
appropriate space is available to properly store all surveillance forms,
programme staff should consider developing a records retention policy
that would describe the record retention and the scheduling of records for
destruction after a designated period. Older records offer only limited
value, but continue to pose a security risk. Sites should carefully weigh the
benefits and risks of retaining any paper copies of case report forms. Such
a decision should be predicated on adherence to these security standards,
national regulations, and local practise. Once a decision has been made to
destroy a case report form, line list, notes or any other related paper
surveillance document, the document must be destroyed in accordance
with Requirement 17.
Requirement 18
Rooms containing surveillance data must not be easily accessible by
window. (GP-1)
Window access, for the purposes of this document, is defined as having a
window that could allow easy entry into a room containing surveillance
data. This does not mean that the room cannot have windows; rather,
windows need to be secure. If windows cannot be made secure,
surveillance data must be moved to a secure location to meet this
requirement.
A window with access, for example, may be one that opens and is on the
first floor. To secure such a window, a permanent seal or a security alarm
may be installed on the window itself. Even if the window does not open,
programme managers may decide to include extra precautions if, for
example, the building does not have security patrols or if the building or
neighbouring buildings have had breaches. If a project area has a concern
about a current or planned physical location, staff can request advice from
CAREC.
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Data Security
For the purposes of this document, a remote site is defined as a site that
remotely connects to and accesses a centralised electronic database to
enter and store surveillance data even though paper forms may be stored
locally. The central database is located in a different physical location than
the remote site. A satellite location is defined as a site that collects and
electronically enters surveillance data in a local database and then sends
the electronic data file to a central location. If remote and satellite sites
maintain case report forms or other surveillance information with personal
identifiers, the central location should not be maintaining duplicate copies
of the case report forms. Surveillance staff should discourage providers
from maintaining duplicate copies of HIV case reports after they have
been reported to the health department.
The national HIV case database should be housed in only one location
(excluding electronic backups and replication for disaster recovery);
however, for countries with multiple database locations, the number of
satellite locations should be kept to a minimum, thereby keeping the data
collection and storage as centralised as possible. If the system is
decentralised, each remote and satellite site should maintain only cases
within that site's jurisdiction, and must meet the same physical security
requirements discussed in the section on ‘Physical Security.’
If, after discussing a records retention schedule, programme staff decide to
retain the hard copy case report form even after the record is entered into
the reporting system, they should consider removing or striking out the
name on the report before storage. The patient number or code would still
provide linkage, when necessary, to the name in the reporting system, but
record security would be improved. This practise would decrease:



the number of places where names are stored
the amount of time they are held
the number of persons who may have access to them in the future.
Security software that controls the storage, removal, and use of data
maintained in the reporting system should be in place at all locations
where the electronic surveillance data are maintained. Security software
may include such protections as user identifications, passwords, boot
protection, encryption algorithms, and digital signatures. Additionally, an
area may maintain names outside of the reporting system and use a state
ID number to link name and surveillance information when needed.
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Data Movement
Requirement 19
Surveillance information must have personal identifiers removed (an
analysis dataset) if taken out of the secured area or accessed from an
unsecured area. (GP-1)
Requirement 20
An analysis dataset must be held securely using protective software (i.e.,
software that controls the storage, removal and use of the data). (GP-1)
Requirement 21
Data transfers and methods for data collection must be approved by the
ORP and incorporate the use of access controls. Confidential surveillance
data or information must be encrypted before electronic transfer. Ancillary
databases or other electronic files used by surveillance also need to be
encrypted when not in use. (GP-1)
Electronic files stored for use by authorised surveillance staff should be
encrypted until they are actually needed. If these files are needed outside
of the secure area, real-time encryption or an equivalent method of
protection is required. This requirement also applies in those situations
where surveillance data are obtained electronically from external sources
(clinical data management systems and laboratories) or as part of a
separate collection system. Extracts from those systems need to be
protected as if they were extracts from the surveillance data system.
Additionally, those systems within other health facilities need to be held to
the same standards as the HIV surveillance systems. External agencies are
to be encouraged to review their procedures, and approved data transfer
methods need to be used.
Requirement 22
When case-specific information is electronically transmitted, any
transmission that does not incorporate the use of an encryption package
meeting national standards and approved by the ORP must not contain
identifying information or use terms easily associated with HIV/AIDS.
The terms HIV or AIDS, or specific behavioural information, must not
appear anywhere in the context of the communication, including the
sender and/or recipient address and label. (GP-2)
The intent of this requirement is to eliminate the possibility that a third
party may identify a person as being HIV-infected or a member of an HIV
risk group. When trying to locate an HIV-infected person during an
investigation or interview, do not send letters or leave business cards or
voice messages at the person's residence if they include any terminology
that could be associated with HIV, AIDS or the health department.
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Requirement 22, continued
These precautions need to be taken in case a family member or friend
discovers the letter or card or hears the voice message. Similarly, if a third
party calls the telephone number listed on a card or letter, that party should
not be able to determine by a phone greeting that it is an HIV surveillance
unit (or the health department); nor should a third party be able to obtain
that information by pretending to be the case patient. This may require the
use of some confirmation mechanism to assure that the person calling is
really the case patient and not someone pretending to be that person in
order to discover confidential information.
If secure fax or encrypted e-mail transmissions are used at all (a practise
that is strongly discouraged), care must be taken to avoid linking HIV or
risk factor status with identifiable information about a person. This may
include ensuring that the terms HIV or AIDS do not appear in the fine
print at the very top of a fax, indicating who sent it, and that these terms
do not appear in more obvious locations in the letterhead and body of the
fax. Other important steps include thinking about who else besides the
intended recipient may have access to faxes on the receiving end, and the
possibility of misdialling the fax number or using the incorrect e-mail
address.
Requirement 23
When identifying information is taken from secured areas and included on
line lists or supporting notes in either electronic or hard copy format, these
documents must contain only the minimum amount of information
necessary for completing a given task and, where possible, must be coded
to disguise any information that could easily be associated with HIV or
AIDS. (GP-1)
One purpose of this requirement is to make it difficult to link an
individual's name on a line list with HIV/AIDS, should that line list fall
into the hands of an unauthorised person. Terms that could be associated
with HIV/AIDS include CD4 count or opportunistic infection (OI).
Programmes should consider using less recognisable terms, codes, or
abbreviations, such as T-lymphocyte count or OI. In some circumstances,
just the word "count" may suffice. While risk factor information (e.g.,
injection drug use or sexual orientation) may not necessarily be associated
with HIV/AIDS, it is, nevertheless, highly sensitive. Wherever possible,
risk factor categories must be coded to help minimise the possibility of a
breach. If a coding scheme for transmission category is already built into
the reporting system, the codes should be used when there is a need to
generate line lists with risk factor categories. When surveillance staff write
notes, they should make it a habit to use these risk factor codes. For
example, instead of using the phrase ‘injection drug user’ or the readily
decipherable abbreviation IDU, a code could be substituted.
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Requirement 23, continued
This requirement applies to information or data taken from secure areas. It
does not refer to data collected from the field and taken to secure areas.
While coding of terms associated with HIV/AIDS in the field is
encouraged, there may be occasions when it cannot be done; for example,
when uncoded terminology must be abstracted from a medical chart
during the course of an investigation.
Requirement 24
Surveillance information with personal identifiers must not be taken to
private residences unless specific documented permission is received from
the surveillance co-ordinator. (GP-1)
Under exceptional circumstances, HIV surveillance information with
personal identifiers may be taken to private residences without approval if
an unforeseen situation arises that would make returning to the
surveillance office impossible or unsafe. For example, if a worker carrying
sensitive information were caught in a sudden heavy snowstorm, driving
home instead of returning to the office would be permissible, provided the
worker's supervisor is notified (or an attempt was made to notify the
supervisor) of the need to return home with the sensitive information.
Precautions should be taken at the worker's home to protect the
information under such circumstances. All completed or partially
completed paper case report forms should be transported in a locked
satchel or briefcase.
Managing field time effectively can be accomplished by using a variety of
creative tactics. Field visits should be scheduled in the most efficient way
possible. One option is to assign provider sites to workers by geographic
area. For example, all providers in the east sector could be covered by the
same worker to minimise travel time between sites. Another option might
be to schedule visits so that sites located far from the office receive visits
early in the day, with staff working their way back to the office by the end
of the day. A flex-time schedule is another option that a site may wish to
consider.
If returning to the secured area creates significant inefficiencies in case
surveillance investigations, alternative methods of securing sensitive
surveillance information could be considered when developing the policy
that satisfies this requirement.
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Requirement 24, continued
Investigators could incorporate the use of pre-addressed, stamped
envelopes and drop completed case report forms in the mail before
returning home for the day. Tampering with the mail is a criminal offence,
and case reports are considered better protected in the mail than at a
private residence. This possibility should be accounted for when
developing the mail policy discussed in Requirement 9.
Some areas do not complete case report forms on-site, but take notes using
shorthand that is not easily translated and does not contain HIV-related
terms. Notes such as these could be stored in less secure areas because
someone seeing the notes would not understand their meaning. When this
method is used, blank case report forms or other HIV-related materials
should not be stored at the same location as the notes. Staff using this
technique may carry the notes around discreetly (e.g., in a purse or
notebook) and then complete official forms when they return to the
surveillance office. Other methods to disguise the data, de-identify it, or
separate sensitive variables from it could be used to eliminate the need to
return to the office at the close of business (i.e., if personal identifiers are
removed using approved methods, the information is less sensitive and
may be secured off-site). Whatever methods are used, the approved
method must be described in the local security policy.
Requirement 25
Prior approval must be obtained from the surveillance co-ordinator when
planned business travel precludes the return of surveillance information
with personal identifiers to the secured area by the close of business on the
same day. (GP-1)
Policies and procedures for gaining prior approval for not returning
surveillance information with personal identifiers to the secured area at the
close of each business day should be implemented. Refer to the discussion
following Requirement 24 for additional considerations.
Transferring data
between sites
In some instances, it may be necessary to transfer data between sites, e.g.,
between parish/district health departments. The sending and receiving
sites must agree on the product that will be used for that purpose and
identify the method of transfer. Transport by a designated officer should
be done in such a manner as to minimise the risk of the information
getting into unofficial hands, i.e., by direct non-stop transfer with
handover to the designated person. There should be written records of the
transfer and receipt of the documents. See Requirement 23 for electronic
transfer of information and Requirement 9 for mailing of sensitive
documents.
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Access Control
Local Access
Requirement 26
Access to any surveillance information containing names for research
purposes (that is, for other than routine surveillance purposes) must be
contingent on all of the following conditions being met:



a demonstrated need for the names
documentation of approval by the Institutional Review Board (IRB) of
the country’s Ministry of Health (or designate)
signing of a confidentiality statement regarding rules of access and
final disposition of the information.
Access to surveillance data or information without names for research
purposes beyond routine surveillance may still require IRB approval
depending on the numbers and types of variables requested in accordance
with local data release policies. (GP-1)
Most analyses of HIV surveillance data do not require IRB approval; in
fact, most such analyses do not require the inclusion of identifying
information in the data sets. Occasionally, investigators from other health
department units or academia want to conduct supplemental studies using
reported case patients as their study population.
Additionally, clinic-based researchers may want to obtain additional
information on their patients.
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Requirement 26, continued
In these cases, the researcher should submit a request for the data set to the
HIV surveillance co-ordinator. The surveillance co-ordinator should then
refer to the local data release policy to determine if any of these types of
data sets can be released. Data containing patients' names are not normally
released for research purposes; furthermore, the data release policy should
anticipate that even data not containing names could be used to breach an
individual's confidentiality if data sets are created or can be created that
could indirectly identify any individual (e.g., a data set of all Asian
haemophiliacs with HIV infection in a county with a low Asian population
and low morbidity).
Under certain circumstances and in accordance with local data release
policies, the surveillance co-ordinator should refer the researcher to the
Chair of the IRB. If the Chair determines that an IRB should be convened,
both the researcher and surveillance co-ordinator must abide by the ruling.
The IRB may approve the release of an analysis data set. Before a
researcher obtains access to a data set, the surveillance co-ordinator must
obtain a signed statement from the researcher certifying that he or she will
comply with standards outlined in the local security policy. Signing this
statement should indicate that the researcher:



understands the penalties for unauthorised disclosure
assures that the data will be stored in a secured area
agrees to sanitise or destroy any diskettes or other storage devices that
contain the data set when the research project is completed.
If the researcher is a member of the HIV surveillance unit and already has
a signed confidentiality statement on file, there is no need to sign an
additional statement.
Analysis databases or data sets that are released to individuals who work
outside the secured area must be held securely until the data are approved
for release. For example, epidemiologists or statisticians who do not work
in the secured area often use analysis databases for routine analysis. The
computers used in these circumstances must have protective software
(e.g., user ID and password protection) to maintain data securely. Other
robust authentication methods also may be used since the examples
described are only the minimum required. Encryption software is not
required with analysis databases because they are considered much less
sensitive than those that contain names or other personal identifiers.
Analysis data are still considered sensitive, since it may be possible to
identify individuals by using particular combinations of reporting system
variables.
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Requirement 26, continued
For that reason, analysis data should not be taken home, and all the results
of all analyses performed by using reporting system variables must be
approved for release as outlined in the surveillance unit's data release
policy.
Requirement 27
Access to any secured areas that either contain surveillance data or can be
used to access surveillance data by unauthorised individuals can only be
granted during times when authorised surveillance or IT personnel are
available for escort or under conditions where the data are protected by
security measures specified in a written policy and approved by the ORP.
(GP-1)
If unauthorised personnel (e.g., cleaning or maintenance crews) are
allowed access to the secured area during times when surveillance staff are
not present, then more stringent security measures must be employed
inside the secured area to meet the programme requirements. Under such
circumstances, computerised surveillance information and data stored on
one or more stand-alone computers or accessible via a LAN-connected
workstation must be held securely with access controls in place, such as
boot-up passwords that prevent unauthorised access to the computer's hard
drive by booting from a system disk; encryption software; or storing the
data on removable devices that can be locked away before allowing
unauthorised personnel access. If surveillance information is stored on a
LAN server, accounts with authorised access should be restricted by time
of day and day of week. See Requirement 7.
Managing keys or keypad codes to a secure area is difficult when
personnel who receive the keys or codes are not directly supervised by the
surveillance unit. Because of staff turnover in cleaning crews, the number
of people who may be given keys or codes to the secure area may multiply
over time. The more people with keys and codes, the greater the risk to the
system. While tracking who has a key or code in this scenario can be
difficult, it is recommended that a method of tracking and logging the
issuance of keys or codes be implemented. It is further recommended that
if an accurate accounting of all keys or codes to a secure area cannot be
made, that the lock or code to that area be changed and that new keys or
codes be issued using the tracking and logging method developed.
While many surveillance programmes do not routinely grant access to the
secured area to cleaning crews or maintenance staff, programme
requirements can be met even if cleaning crews are granted access without
authorised escort, provided that added measures (as discussed previously)
are employed. The added measures must be named and described in the
local security policy.
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Requirement 27, continued
For example, the policy might state that in lieu of escorting cleaning crews
and other maintenance staff inside the secured area after hours, the
surveillance unit will implement additional documented security measures
to provide for enhanced data protection.
Requirement 28
Access to confidential surveillance information and data by personnel
outside the surveillance unit must be limited to those authorised based on
an expressed and justifiable public health need, must not compromise or
impede surveillance activities, must not affect the public perception of
confidentiality of the surveillance system, and must be approved by the
ORP. (GP-1)
The primary function of HIV surveillance is the collection and
dissemination of accurate and timely epidemiologic data. Areas that elect
to establish linkages to other public health programmes for prevention or
case management should develop policies and procedures for sharing and
using reported data that ensure the quality and security of the surveillance
system. These programmes should be developed in consultation with
providers and community partners, such as their prevention planning
groups. Recipients of surveillance information must be subject to the same
training requirements and penalties for unauthorised disclosure as
surveillance personnel.
Before establishing any programme's linkage to confidential surveillance
data, public health officials should define the public health objectives of
the linkage, propose methods for the exchange of information, specify the
type of surveillance data to be used, estimate the number of persons to be
served by the linkage based on the availability of resources, outline
security and confidentiality procedures, and compare the acceptability and
effectiveness of basing the prevention programmes on individual HIV
surveillance case reports to other strategies. The ORP must have the final
approval of proposed linkages, since the ORP is ultimately responsible for
any breach of confidentiality.
Prevention programmes that use individual HIV surveillance case data
should evaluate the effectiveness of this public health approach. On an
ongoing basis, programmes also should assess confidentiality policies,
security practises, and any breaches of confidentiality. Individual HIV
case reports should not be shared with programmes that do not have welldefined public health objectives or with programmes that cannot guarantee
confidentiality.
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Requirement 29
Access to surveillance information with identifiers by those who maintain
other disease data stores must be limited to those for whom the
ORP has weighed the benefits and risks of allowing access and can certify
that the level of security established is equivalent to the standards
described in this document. (GP-2)
Security is compromised if other programmes that lack adequate standards
to protect the security and confidentiality of the data are granted access to
HIV surveillance data or information and use that access to add HIV data
to their systems.
Linking records from the surveillance data with records from other
databases semi-annually or annually is encouraged to identify cases not
previously reported, such as cases identified through TB surveillance or
cancer surveillance. This provides a systematic means to evaluate the
performance of health department surveillance and to take action to
strengthen weaknesses in systems as they are identified. For example,
programmes can plan site visits with those providers who do not comply
with the country’s reporting laws to stimulate more timely and complete
reporting.
Before the linkage of surveillance data, protocols should be discussed and
developed. The protocol should address how the linkage will be performed
using methods that are secure, who will analyse the results, and how the
information will be used to improve the selected surveillance systems.
Requirement 30
Access to surveillance information or data for non-public health purposes,
such as litigation, discovery or court order, must be granted only to the
extent required by law. (GP-2)
Some state laws mandate access to HIV surveillance information for
purposes other than law enforcement or litigation activities. For example,
some states in the US require school officials or prospective parents to be
notified when they enrol or adopt HIV-infected children. However, the
surveillance unit is not necessarily required to release the information just
because it is requested by law enforcement or other officials. Access
should be granted only to the extent required by law and not beyond any
such requirement.
Any request for surveillance information for law enforcement purposes
should be reviewed by the ORP with the appropriate legal counsel to
determine what specific information, if any, must be released from records
maintained solely for epidemiologic purposes.
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Requirement 30, continued
Medical information may be available to the courts from less convenient
but more appropriate sources. When information is ordered released as
part of a judicial proceeding, any release or discussion of information
should occur in closed judicial proceedings, if possible.
Central, Decentral, and Remote Access
The most secure protection for HIV surveillance data is having only one
centralised database in each country. Centralised data stores are those in
which all electronic records of HIV cases are stored in only one location
within each country.
Centralisation of HIV surveillance data within a country has clear benefits.
First, centralised data stores offer greater security. The advantages of
having several HIV surveillance databases throughout a country may be
outweighed by the risk of a security breach. Centralised data stores add
efficiency by improving case matching. With a centralised database,
remote surveillance staff may conduct matches against the
parish/county/district database, thereby reducing local-level duplicates and
minimising unnecessary field investigations of cases already reported
elsewhere in the country. Centralised systems may cost less to maintain.
Finally, a centralised platform may support parallel surveillance systems
(e.g., TB and STI). In other words, the hardware used for centralised
systems could enhance surveillance activities for other diseases, without
increasing access to the HIV database or compromising existing database
security in any way.
Technologies such as browser-based applications, the internet, Wide-Area
Networks (WANs), and advances in data encryption technology and
firewalls have made centralisation of HIV surveillance data more feasible.
New browser-based applications have numerous technical access controls,
including authentication of the individual attempting access,
assignment/restriction of access rights at the variable/field level, and
assignment/restriction of access to functional components (role-based
privileges). Use of a centralised database allows data entry and data
analysis directly from the remote location while preventing access to nonauthorised uses. Further, the capacity exists to assign access rights and
privileges to staff just as is done in a decentralised system. In addition to
these access controls, centralised systems can be configured to limit access
by allowing only those connections originating from an authorised person
using an authorised workstation.
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Central, Decentral, and Remote Access, continued
A centralised database can be accessed using a WAN or the internet, both
of which have advantages and disadvantages. A WAN often uses
transmission facilities provided by common carriers, such as telephone
companies, to establish a dedicated, private and permanent point-to-point
connection between satellite or remote offices and the central database, an
option that may be cost-prohibitive for some countries. All
communications between points must still be password-protected, and
communications must be encrypted using methods that meet the data
encryption standards set forth in this guidance. Use of the internet does not
require dedicated phone lines and establishes temporary point-to-point
connections over a public medium. This would be a less expensive
alternative but, because the internet is a public medium, a Virtual Private
Network (VPN) must be established to guard against intrusion during
communications. In addition to establishing a VPN, these communications
must also be encrypted using methods that meet the data encryption
standards set forth in this guidance. Additionally, firewalls must be in
place to prevent unauthorised access. When properly configured, a
centralised system allows each local jurisdiction complete access to their
HIV data while prohibiting access by outside jurisdictions. A local
jurisdiction can conduct local-level data analyses directly from a central
dataset, or they may download a de-identified dataset for analysis.
If centralisation is not yet feasible, each satellite site should maintain only
cases within their jurisdiction.
For matching case notifications, sites may consider the utility of
maintaining limited data on out-of-jurisdiction cases receiving care and/or
reported in their jurisdiction.
Security Breaches
Requirement 31
All staff who are authorised to access surveillance data must be
responsible for reporting suspected security breaches. Training of nonsurveillance staff must also include this directive. (GP-3)
Requirement 32
A breach of confidentiality must be immediately investigated to assess
causes and implement remedies. (GP-4)
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Requirement 33
A breach that results in the release of private information about one or
more individuals (breach of confidentiality) should be reported
immediately to the Chief Medical Officer of the Ministry of Health. In
consultation with appropriate legal counsel, surveillance staff should
determine whether a breach warrants reporting to law enforcement
agencies. (GP-4)
A breach may be attempted, in progress, done without negative outcome,
or done with negative outcome. Attention should be paid to identifying a
breach, responding to it, repairing damage, learning from the event, and if
necessary, revising or enhancing policies and procedures, revising or
instituting training, or enhancing physical or operational security.
By keeping a log of breaches and lessons learned from investigating them,
the surveillance unit will be able to detect patterns of breaches, track
compliance, and incorporate improvements to the security system.
The ORP should be notified of all breaches of confidentiality (i.e., those
breaches that result in the unauthorised disclosure of private information
with or without harm to one or more individuals).
Laptops and Portable Devices
Requirement 34
Laptops and other portable devices (e.g., personal digital assistants
[PDAs], other hand-held devices, and tablet personal computers [PCs])
that receive or store surveillance information with personal identifiers
must incorporate the use of encryption software. Surveillance information
with identifiers must be encrypted and stored on an external storage device
or on the laptop's removable hard drive. The external storage device or
hard drive containing the data must be separated from the laptop and held
securely when not in use. The decryption key must not be on the laptop.
Other portable devices without removable or external storage components
must employ the use of encryption software that meets federal standards.
(GP-1)
With current rate advances in technology, laptop computers, PDAs, and
other hand-held or portable devices may common tools for HIV
surveillance in the Caribbean and may be key components of centralised
surveillance systems. Unfortunately, laptops are vulnerable to theft.
Although the likely target of the theft would be the device rather than the
data, extreme care must be taken if the device stores HIV surveillance data
or information.
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Requirement 34, continued
If surveillance data are stored on the device's hard drive, hard drives must
be removable and stored separately when the device is being transported
to and from the secured area.
Alternatively, a security package that uses both software and hardware
protection can be used. For example, an acceptable, though not as robust,
level of protection can be achieved by using a smart disk procedure. This
procedure prevents the device from booting up unless an encoded smart
disk is inserted when the device is first turned on and a password is
entered. Such a smart disk must not be stored with the device while in
transit. The smart disk must be used in conjunction with an encryption
package. Using this kind of protection scheme is critical, because the
device is capable of containing large amounts of sensitive information
(e.g., names, addresses, dates of birth). Therefore, if a device has sensitive
data on either an external storage device or hard drive, it must be taken
back to the secured area at the close of business (unless out-of-town
business travel is approved). Contingency plans should be in place to
outline protective steps to take in case returning to the secure surveillance
area is not possible. See Requirement 24 and Requirement 25. A
removable drive is worth using even if data are encrypted and the laptop
employs several layers of security.
Another option to consider when using laptops is to store encrypted data
on an external storage device. If the device is lost or stolen, the data are
protected. Unlike the laptop's hard drive, an external storage device lacks
market value and is not as likely to be stolen or reused. Nonetheless,
external storage devices containing patient identifiers must be encrypted
when taken out of a secure area. For more information about removable
and external storage devices, refer to section ‘Removable and External
Storage Devices.’
With the inception of Wireless Fidelity (Wi-Fi) products, many devices
can now connect wirelessly to the internet or a LAN. This functionality
introduces risks regarding devices used to collect or store surveillance
data. If these devices are not properly configured, data can be transmitted
wirelessly over great distances without protection; this can result in the
data being exposed to anyone with similar wireless products. Even if data
are not being transmitted wirelessly, but the device is capable of a wireless
connection to the internet, data stored on the device are susceptible to
compromise by exposure to the internet. For example, surveillance data
may be collected in the field and stored on a laptop with Wi-Fi capability.
The person collecting the data stops by a store that has a "hot spot" in
order to connect to the internet and check e-mail. The data stored on the
laptop have the potential to be compromised.
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Requirement 34, continued
Any use of Wi-Fi or similar evolving wireless technologies must be given
serious consideration when developing local policies. It is strongly
recommended that any local policy developed in response to Requirement
34 include explicit language regarding wireless technologies.
Removable and External Storage Devices
Requirement 35
All removable or external storage devices containing surveillance
information that includes personal identifiers must:



include only the minimum amount of information necessary to
accomplish assigned tasks as determined by the surveillance coordinator
be encrypted or stored under lock and key when not in use
with the exception of devices used for backups, devices should be
sanitised immediately following a given task.
External storage devices include but are not limited to diskettes, CDROMs, USB port flash drives (memory sticks), zip disks, tapes, smart
cards, and removable hard drives. Deleting electronic documents does not
necessarily make them irretrievable. Documents thought to be deleted
often are preserved in other locations on the computer's hard drive and on
backup systems. Acceptable methods of sanitising diskettes and other
storage devices that previously contained sensitive data include
overwriting or degaussing (demagnetising) before reuse. Alternatively, the
diskettes and other storage devices may be physically destroyed (e.g., by
incineration). Such physical destruction would include the device, not just
the plastic case around the device.
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Summary
When conducting HIV surveillance, be mindful of patient confidentiality.
Persons with HIV/AIDS are often subject to physical, legal and social
harms. Also, try to take advantage of the potential benefits of surveillance,
such as reducing stigma and guiding prevention and treatment
programmes.
Information on persons with HIV infection must be properly protected to
prevent breaches of security that can result in disclosure of their HIV
status. All policies developed and surveillance activities conducted should
take into account the five guiding principals of data security. Countries
should also work towards achieving the requirements described with
regard to policies, training, physical security, data security and security
breaches.
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Unit 7 Exercises
Warm-up
review
Take a few minutes now to look back at your answers for the warm-up
questions at the beginning of the unit. Make any changes you want.
Small group
discussion
Get into small groups by country, region or province to discuss these
questions.
1. What are the current regulations for surveillance among minors in your
region?
2. Do you know of cases where violence or other problems have occurred
when an individual was identified as HIV-infected? What happened in
that case?
3. What high-risk groups have been identified in your district, region or
country? What are some special considerations in dealing with highrisk populations?
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Apply what
you’ve learned/
case study
Try this case study. We will discuss the answers in class.
You are the health officer in charge of HIV surveillance for Inyo Province
in Cariba. You have been asked to design and implement a special seroprevalence survey among male patients with acute urethritis attending the
STI clinic at the provincial referral hospital.
You are weighing two choices:


The first choice would entail a self-administered questionnaire and an
additional blood test for HIV and syphilis.
The second choice would entail a blinded survey of all patients who
have blood drawn for syphilis serologies. Approximately 50% of
patients who present with acute urethritis have serum samples drawn
for syphilis; syphilis serologies are done at the clinician’s discretion,
and there is no standard protocol for when to order these serologies.
Now answer these questions.
a. For which option would you need informed patient consent?
b. How likely are the two options to yield an accurate estimate of the
prevalence of HIV infection in this patient population?
c. In which option would patient confidentiality be better protected?
d. If you were to offer an incentive (for example, reimbursement for
transportation) to participants in Option 1, would this be
considered ethical?
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Annex 7.1. Additional Laptop Security Considerations
Basic Security
Choose a secure operating system and lock it down
An operating system that is secure and offers a secure logon, file level security, and the
ability to encrypt data should be used. A password is considered a single-factor
authentication process, but for enhanced security, commercial products can be used that
change the access to a two-factor authentication. This can be achieved, for example, by
using a password and an external device that must be plugged into the USB port.
Enable a strong BIOS password
The basic input/output system (BIOS) can be password protected. Some laptop
manufacturers have stronger BIOS protection schemes than others. In some models, the
BIOS password locks the hard drive so it cannot be removed and reinstalled into a similar
machine.
Asset tag or engrave the laptop
Permanently marking (or engraving) the outer case of the laptop with a contact name,
address, and phone number may greatly increase the likelihood of it being returned if it is
recovered by the authorities. A number of metal tamper-resistant commercial asset tags
are also available that could help the police return the hardware if it is recovered. Clearly
marking the laptops may deter casual thieves.
Register the laptop with the manufacturer
Registering the laptop with the manufacturer will flag it if a thief ever sends the laptop in
for maintenance. The laptop's serial number should be stored in a safe place. In the event
the laptop is recovered, the police can contact you if they can trace it back to your office.
Physical Security
Get a cable lock and use it
Over 80% of the laptops on the market are equipped with a Universal Security Slot (USS)
that allows them to be attached to a cable lock or laptop alarm. While this may not stop
determined hotel thieves with bolt cutters, it will effectively deter casual thieves who may
take advantage of users while their attention is diverted. Most of these devices cost
between US$30 and US$50 and can be found at office supply stores or online. However,
these locks only work if tethered properly to a strong, immovable, and unbreakable
object.
Use a docking station
Many laptop thefts occur in the office. A docking station that is permanently affixed to
the desktop and has a feature that locks the laptop securely in place can help prevent
office theft. If a user is leaving the laptop overnight or for the weekend, a secure filing
cabinet in a locked office is recommended.
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Lock up the PCMCIA NIC cards
While locking the laptop to a desk with a cable lock may prevent laptop theft, a user can
do little to keep someone from stealing the Personal Computer Memory Card
International Association (PCMCIA) Network Interface Card (NIC) or modem that is
inserted into the side of the machine. These cards can be removed from the laptop bay
and locked in a secure location when not in use.
Use a personal firewall on the laptop
Once users connect to the web from home or a hotel room, their data are vulnerable to
attack, as firewall protection provided in the office is no longer available. Personal
firewalls are an effective and inexpensive layer of security that can be easily installed. It
is recommended that a third-party personal firewall be used to secure workstations.
Consider other devices based on needs
Since laptop use has become common, as has laptop theft, a variety of security-enhancing
devices are now available. Motion detectors and alarms are popular items, as are hard
drive locks. Biometric identification systems are also being installed on some laptop
models, which allow the fingerprint to be the login ID instead of a password. Cost, utility
and risk need to be taken into account when considering additional devices.
Preventing Laptop Theft
No place is safe
Precautions need to be taken with a laptop regardless of location, as no situation is
entirely without risk. As discussed previously, the laptop should always be secured by
using a cable lock or secure docking station.
Use a nondescript carrying case
Persons walking around a public place with a leather laptop case can be targets. A
formfitting padded sleeve for the laptop carried in a backpack, courier bag, briefcase, or
other common nondescript carrying case may be safer. If a person is travelling in airports
and train stations, small locks on the zippers of the case (especially backpacks) can be
used (when not passing through security checkpoints) to prevent a thief from reaching
into the bag.
Beware of distractions
Business travellers often use cell or pay phones in airports, restaurants, and hotel lobbies.
Care needs to be taken that a laptop set down on the floor or a nearby table is not stolen
while someone is engrossed in a telephone conversation.
When travelling by air
Sophisticated criminals can prey on travellers. When carrying a laptop, travellers need to
use caution to safeguard it. When a person sets a laptop bag down for a minute to attend
to other things, there may be a risk of theft. Always be aware of your surroundings
because a thief could be waiting for that moment of distraction to grab a laptop (or other
valuables).
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When travelling by car
When transporting a laptop, it is safer to rent a car with a locking trunk (not a
hatchback/minivan/SUV). Regardless of vehicle type, laptops should never be visible
from outside of the car. Even when the laptop is in the trunk, the cable lock can be used
to secure the laptop to the trunk lid so it cannot be taken easily.
While staying in a hotel
The hazards of leaving valuables in hotel rooms are well documented, and professional
thieves know that many business travellers have laptops that can be resold. If a user keeps
the laptop in the hotel room, it can be securely anchored to a metal post or fixed object.
Make security a habit
People are the weakest link in the security chain. If a person cares about the laptop and
the data, a constant awareness of potential risks will help keep it safe. The laptop should
always be locked up when it is not being used or is in storage. (A cable lock takes less
time to install than it does for the PC to boot.) Use common sense when travelling and
maintain physical contact with the laptop at all times. If you are travelling with trusted
friends or business associates, take advantage of the buddy system to watch each other's
equipment.
Protecting Sensitive Data
Use the New Technology File System (NTFS) (proprietary to Windows
operating systems)
Assuming a user has Windows NT/2000/XP on the laptop, use the NTFS to protect the
data from laptop thieves who may try to access the data. File Allocation Table (FAT) and
FAT32 file systems do not support file-level security and provide hackers with an
opening into the system.
Disable the guest account
Always double check to make sure the guest account is not enabled. For additional
security, assign a complex password to the account and completely restrict login times.
Some operating systems disable the guest account by default.
Rename the administrator account
Renaming the administrator account will stop some hackers and will at least slow down
the more determined ones. If the account is renamed, the word 'Admin' should not be in
the name. Use something innocuous that does not sound like it has rights to anything.
Remember that some computer experts argue that renaming the account will not stop
everyone, because some persons will use the Security Identifier (SID) to find the name of
the account and hack into it. The SID is a machine-generated, non-readable binary string
that uniquely identifies the user or group.
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Consider creating a dummy administrator account
Another strategy is to create a local account named 'Administrator,' and give that account
no privileges and a complicated 10+ digit complex password. If a dummy administrator
account is created, enable auditing so a user knows when someone has tampered with it.
Prevent the last logged-in user name from being displayed
When a user presses CTRL+ALT+DEL, a login dialog box may appear that displays the
name of the last user who logged into the computer. This can make it easier to discover a
user name that can later be used in a password-guessing attack. This action can be
disabled by using the security templates provided on the installation CD-ROM or via
Group Policy snap-in. For more information, see Microsoft KB Article Q310125.
Enable EFS (Encrypting File System) in Windows operating systems
Some operating systems ship with a powerful encryption system that adds an extra layer
of security for drives, folders or files. This will help prevent a hacker from accessing the
files by physically mounting the hard drive on another PC and taking ownership of files.
Be sure to enable encryption on folders, not just files. All files that are placed in that
folder will automatically be encrypted.
Disable the infrared port on a user laptop (if so equipped)
Some laptops transmit data via the infrared port on the laptop. It is possible for a person
to browse someone else's files by reading the output from the infrared port without the
laptop user knowing it. Disable the infrared port via the BIOS, or, as a temporary
solution, simply cover it up with a small piece of black electrical tape.
Back up the data before a user leaves
Many organisations have learned that the data on the computer is more valuable than the
hardware. Always back up the data on the laptop before a user does any extended
travelling that may put the data at risk. This step does not have to take a lot of time, and a
user can use the built-in backup utilities that come with the operating system. If the
network does not have the disk space to back up all of the travelling laptop user's data,
consider personal backup solutions, including external hard drives (flash sticks), CD-Rs,
and tape backup—all of which can also be encrypted.
Consider using offline storage for transporting sensitive data
Backing up the hard drive before users leave can help them retrieve the data when they
return from a trip, but it does not provide an available backup of the data when they are
out in the field. Several vendors offer inexpensive external storage solutions that can hold
anywhere from 40 MB to 30 GB of data on a disk small enough to fit easily into the
pocket. By having a backup of the files users need, they can work from another PC in the
event that their laptop is damaged or missing. Most of these devices support password
protection and data encryption, so the files will be safe even if a user misplaces the
storage disk. When travelling, users should keep these devices with them, not in the
laptop case or checked baggage. For additional security, lock or encrypt the files and
have them sent by a courier service to the destination hotel or office.
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Annex 7.2. Additional Security and Policy Considerations
Access and Storage Devices
Establish and implement policies and procedures for using and transporting secure access
devices (smart card, key FOB, etc.) and external storage devices (diskettes, USB flash
drives, CD-ROM, etc.).
Accountability
Maintain a record of the movements of hardware and electronic media and any persons
responsible for transporting these devices.
Application and Data Criticality Analysis
Assess the relative criticality of specific applications and data in support of other
contingency plan components.
Audit Controls and Logs
Implement hardware, software, and/or procedural mechanisms that record and examine
activity in information systems that contain or use protected electronic health
information. Establish and implement policies and procedures that regularly review
records of information system activity, such as audit logs, access reports, and security
incident tracking reports. Establish and implement policies and procedures for the
backup, archiving, retention and destruction of audit logs.
Automatic Logoff
Establish and implement policies and procedures that terminate any electronic session
after a predetermined period of inactivity.
Browsers
Establish and implement policies and procedures regarding browser configuration for
browser-based applications and internet usage.
Certificates
Establish server and client digital certificate transportation, generation and use policies.
Communications
Letterhead stationery, business cards or dedicated phone lines are used among colleagues
for professional purposes, and, in these cases, references to HIV/AIDS would not
jeopardise the confidentiality of any case patient. In fact, such identification may be an
important part of establishing credibility with providers who report cases. Addressing
both purposes (protecting confidentiality and establishing credibility) will require careful
organisation and perhaps some duplication of communication mechanisms by
surveillance units (e.g., one card and phone line for investigation activities and another
set for providers) or the use of more generic terminology (e.g., 'Epidemiology Unit'
instead of 'HIV/AIDS Surveillance Unit').
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Contingency of Operations and Disaster Recovery
Establish and implement policies and procedures that allow facility access in support of
restoration of lost data under the disaster recovery plan and emergency mode operations
plan in the event of an emergency.
A contingency planning policy and operations policy should address all critical aspects of
contingency planning. Storage of data for backup and disaster recovery purposes should
have the same (if not more stringent) accessibility, accountability and encryption security
requirements as a production system.
Along with the above, the following rules should be followed. They may be included in
the policy or listed separately:








Maintain list of all users and applications with access to the data. The list should
include (per user or application) the day of week and the hours of the day that access
will be needed. Access should be limited to these days and hours. The list should also
identify those with access to identifiers.
Conduct a monthly audit reflecting all successful/unsuccessful access. The report
should include day, time of day and length of access. It should be verified against
authorised users and access requirements.
Define administrative privileges for IT personnel (should be very limited). IT
personnel need to have programme approval before accessing the data.
Identify some form of double authentication process for accessing the data.
Keep systems containing the data in a secured area that is clearly labelled for
authorised personnel only.
Implement column and/or row level encryption of data.
Create a data backup plan that includes procedures to create and maintain exact
copies of protected electronic health information.
Implement electronic procedures that terminate an electronic session after a
predetermined time of inactivity (time-outs).
Emergency Access Procedures
Establish and implement policies and procedures for obtaining necessary protected
electronic health information during an emergency.
Emergency Mode Operation
Establish and implement policies and procedures to enable continuation of critical
business processes for protecting the security of protected electronic health information
while operating in emergency mode.
Encryption and Decryption
Implement a mechanism to encrypt and decrypt protected electronic health information.
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Integrity Controls
Implement security measures to ensure that electronically transmitted protected electronic
health information is not improperly modified without detection until disposed of. Ensure
that any agent—including a contractor or sub-contractor to whom it provides such
information—agrees to implement reasonable and appropriate safeguards to protect the
information.
Internet Connectivity
If a modem (internal or external), DSL or cable is used on a workstation to provide
access to the internet, ensure that passwords and login data used to access the internet are
not stored on the workstation. Most communications software has the capacity to dial a
service, connect a user and even to send a password down the line. To prevent this from
happening, never programme a password into the workstation. Some modems have the
capability to answer the telephone as well as to make calls. Make sure users know how to
tell if their modem has been placed in answering mode and how to turn off that mode.
External modems normally have an indicator light labelled AA that glows if Auto
Answer mode is selected. Internal modems are harder to monitor, but small utility
programmes are available that can help. Call-back modems actually call the user back at
a prearranged number. External modems are recommended because the ease of turning
them off offers programmes the greatest degree of control.
It is highly recommended that workstations holding confidential and sensitive data that
are connected to the internet should be disconnected from the internet except when the
internet is being used for authorised activities.
If the line is for data only, make sure that the telephone number of the line does not
appear in the telephone directory and is not displayed on the telephone itself or on the
wall socket.
Intrusion Detection
Establish and implement policies and procedures regarding intrusion detection and
penetration vulnerabilities.
Keyboard and Screen Locking
Establish and implement policies and procedures for screen saving and keyboard locking.
Logins and Monitoring
Establish and implement policies and procedures for workstation logins, and designate
who can request and authorise changes to a login. Establish and implement policies and
procedures for monitoring login attempts and reporting discrepancies.
Maintenance Records
Establish and implement policies and procedures to document repairs and modifications
to the physical components of a facility that are related to security (for example,
hardware, walls, doors and locks).
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Media Disposal and Re-use
Establish and implement policies and procedures to address the final disposition of
protected electronic health information, and/or the hardware or electronic media on which
it is stored. Establish and implement policies and procedures for removal of protected
electronic health information from electronic media before the media are made available
for re-use.
Networks, LANs, and WANs
Establish and implement policies and procedures governing all servers on the network.
Establish and implement policies and procedures for the documentation of network
configurations and architectures. Topics to include are:









name and location of servers
netware protocols
users, groups and roles that access data and physical server
authentication protocols
e-mail hosting
remote access
web hosting
data located on each server
administrative safeguards.
Computers used to maintain HIV surveillance information with personal identifiers
should not be connected to other computers or computer systems that are located outside
of the secure area until and unless the connection is deemed secure by adding multiple
layers of protective measures—including encryption software, restricted access rights,
and physical protections for the LAN equipment and wiring—and justifying a public
health need to maintain highly sensitive data on a system that has multiple users and
multiple locations. This system should operate under a certified LAN administrator, who
will attest to the system's effectiveness and assume responsibility for any breach of
security directly resulting from the system's failure to protect sensitive data.
Internet access devices (e.g., modems and network interface cards) or cables should not
be connected to any computer or computer system containing surveillance information
and data unless authorised staff need internet access as a means to enhance surveillance
activities. If internet connectivity is used for surveillance activities, specific rules of use
should be provided in writing to authorised users, and they should sign a statement that
they understand those rules.
Password Management
Establish and implement policies and procedures for creating, changing and safeguarding
passwords.
Patching and Service Packs
Establish and implement policies and procedures for security patching and service pack
control.
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Protection from Malicious Software
Establish and implement policies and procedures for guarding against, detecting and
reporting malicious software.
Risk Analysis
Establish and implement policies and procedures that require conducting a regular,
accurate and thorough assessment of the potential risks and vulnerabilities to the
confidentiality, integrity, and availability of protected electronic health information held
by the covered entity.
Routers and Firewalls
Establish and implement policies and procedures regarding router and firewall logs to
capture packets that violate filter criteria. Establish and implement policies and
procedures for firewall and router configuration.
Software Inventory, Releases, Licensing, and Upgrades
Establish and implement policies and procedures for the inventory of authorised software
(including versions) that can be installed on development, training, testing, staging and
production servers and workstations.
Establish and implement policies and procedures for tracking and verifying software
licenses. Establish and implement policies and procedures for pre-release and testing of
software.
Establish a methodology to deploy new or upgraded software to all appropriate
workstations and servers (configuration management). Establish a method for tracking
the software loaded on every workstation and server.
Testing and Revision of Plans
Establish and implement policies and procedures for periodic testing and revision of
contingency plans.
Transmission Security
Implement technical security measures to guard against unauthorised access to protected
electronic health information that is being transmitted over an electronic communications
network.
Workstation Use
Establish and implement policies and procedures that specify the proper functions to be
performed, the manner in which those functions are to be performed and the physical
attributes of the surroundings of a specific workstation or class of workstation that can
access protected electronic health information.
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Annex 7.3. Sample Employee Confidentiality Agreement/Oath
<Insert Name of Agency Here>
Confidentiality Agreement
As an HIV/AIDS Programme employee, sub-contracted employee, student or visiting
professional, I understand that I will be exposed to some very privileged patient information.
Examples of such information are medical conditions, medical treatments, finances, living
arrangements and sexual orientation. The patient's right to privacy is not only a policy of the
HIV/AIDS Programme, but is specifically guaranteed by statute and by various governmental
regulations.
I understand that intentional or involuntary violation of the confidentiality policies is subject to
appropriate disciplinary action(s), which could include being discharged from my position and/or
being subject to other penalties. By initialing the following statements I further agree that:
Initial below
_____ I will never discuss patient information with any person outside of the programme who is
not directly affiliated with the patient's care.
_____ If in the course of my work I encounter facilities or programmes without strict confidentiality
protocols, I will encourage the development of appropriate confidentiality policies and procedures.
_____ I will handle confidential data as discreetly as possible and I will never leave confidential
information in view of others unrelated to the specific activity. I will keep all confidential
information in a locked cabinet when not in use. I will encrypt all computer files with personal
identifiers when not in use.
_____ I will shred any document to be disposed of that contains personal identifiers. Electronic
files will be permanently deleted, in accordance with current HAP required procedures, when no
longer needed.
_____ I will maintain my computer protected by power on and screen saver passwords. I will not
disclose my computer passwords to unauthorised persons.
_____ I understand that I am responsible for preventing unauthorised access to or use of my
keys, passwords and alarm codes.
_____ I understand that I am bound by these policies, even upon resignation, termination or
completion of my activities.
I agree to abide by the HIV/AIDS Programme Confidentiality Policy. I have received, read,
understand and agree to comply with these guidelines.
Warning: Persons who reveal confidential information may be subject to legal action by
the person about whom such information pertains.
___________________________________________________ __________
Signature Date
________________________________________________________
Printed Name
___________________________________________________ __________
Supervisor's Signature Date
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Annex 7.4. Attachment G: Using Surveillance Data to Document
Need and Initiate Referrals
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Annex 7.4. Attachment G, continued
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Annex 7.4. Attachment G, continued
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Annex 7.4. Attachment G, continued
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Annex 7.4. Attachment G, continued
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Annex 7.4. Attachment G, continued
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Annex 7.4. Attachment G, continued
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Annex 7.4. Attachment G, continued
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Unit 8
Analysis, Interpretation, and Dissemination
of HIV Surveillance Data
Overview
What this
unit is about
This unit describes the key stages in the HIV disease natural history that should be
tracked by HIV surveillance activities and how the data are analysed and summarised. It
describes the different analyses that can be preformed from HIV case surveillance data.
Finally, it summarises the types of reports should be generated and disseminated.
Warm-up
questions
1. List three elements of an HIV surveillance report.
a.
b.
c.
2. True or false? The conclusion section of an HIV surveillance report is an
optional element.
True
False
3. True or false? Changes in reporting practises may result in a spurious
increase or decrease in AIDS incidence.
True
False
4. When describing the HIV epidemic, why is it preferable to perform
analysis based on date of diagnosis versus date of report?
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Warm-up questions, continued
5. True or false? Increases in the number of persons receiving ART can
result in a decrease in AIDS incidence, regardless of the number of new
HIV infections occurring.
True
False
6. Which of the following are potential target audiences for surveillance
reports on HIV?
a. people who contribute to collecting the surveillance data
b. healthcare workers
c. public health officials at the district, provincial, national and
international levels
d. all of the above
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Introduction
What you
will learn
By the end of this unit, you should be able to:




summarise data obtained from surveillance activities
interpret HIV case surveillance data
describe the basic elements of an annual HIV Surveillance Report
describe the elements in an annual Epidemiologic Profile.
Understanding the
HIV epidemic
In order to fully understand the HIV epidemic, several key stages in the
disease should be monitored. These include:







HIV incidence (that is, the number or rate of new HIV infections)
HIV prevalence (that is, the number or rate of all persons living with
HIV, regardless of how long they have been infected or whether or not
they are aware of their infection)
incidence of advanced HIV disease
incidence of AIDS
prevalence of advanced HIV disease
prevalence of AIDS
HIV-related deaths
These target points for HIV surveillance are described in Unit 4.
Background
Decisions regarding public health are dependent on quality data. Accurate
surveillance data are central to the effective monitoring of trends in HIV
infection, identification of risk behaviours within populations, and the
successful development and evaluation of HIV intervention and
prevention programs. It is also important that surveillance data be
presented in a manner that facilitates their use for public health action.
Therefore, it is essential that HIV surveillance data meet certain criteria
for quality before being analysed and disseminated.
The following guidelines describe recommendations related to data
quality, as well as the required and recommended HIV/AIDS analyses and
reports.
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Using HIV
case surveillance
data
The introduction of HIV case surveillance is necessary due to the
increased availability of ART in developed countries, which has markedly
altered the natural history of HIV infection.


Without ART, it takes an average of eight to ten years for an HIVinfected person to develop AIDS.
With ART, the progression to AIDS is delayed or possibly prevented.
In this situation, relying just on AIDS case surveillance will miss many
HIV-infected persons. The current method of estimating HIV prevalence
in developing countries is to conduct unlinked anonymous HIV seroprevalence surveys in women attending antenatal clinics and/or high-risk
populations. While these have been reasonable methods of estimating HIV
prevalence, WHO encourages countries to conduct HIV case surveillance,
as described in Unit 4: HIV Case Surveillance.
Interpretation of HIV case surveillance data should begin only after HIV
case surveillance has been in place for a long enough period of time for:
 all previously reported cases have been entered into the HIV case
surveillance database
 case-finding for old unreported cases has been done and entered into
the database
 assessment of the HIV case surveillance system shows that it is
functional (see Unit 5: Monitoring Surveillance System Quality)
This may take several years. This is to be sure that the data, especially
trend data, are not misinterpreted. For example, in the first year of
reporting, some of the newly diagnosed persons will be reported. In
subsequent years, more infected people will be reported, but these reports
may be from patients who were diagnosed in the past but not yet reported.
Alternatively, these may be newly diagnosed persons. Once the people
with long-standing HIV infection have been reported, data may be
analysed in the same way that AIDS case data were analysed.
Additionally, the WHO revised the surveillance case definitions to capture
a broader spectrum of advanced disease and to link case surveillance to
use of ART. Data collection in ART programmes should make HIV and
advanced HIV case surveillance easier. WHO ART recommendations:


call for considering use of ART for patients at HIV clinical stage 3
recommend use of ART for patients at HIV clinical stage 4.
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Using HIV case surveillance data, continued
Countries that conducted AIDS case surveillance in the past that initiate
HIV case surveillance (all clinical and immunologic stages) will be able to
continue monitoring AIDS trends.
It is critical to clearly define terms used in analysis of HIV case
surveillance. Your audience may not be familiar with HIV case
surveillance, how it is collected and how it should be interpreted.
Also, use caution when interpreting data from HIV case surveillance,
keeping in mind this is the number of persons who have been diagnosed
with the disease and not all persons who are infected. We do not know
what the true incidence or prevalence of HIV is in the population. Seroprevalence surveys are a way to measure this (See Unit 4), and HIV case
surveillance data tells us the number of persons who know they are
infected and therefore are likely to enter care and/or treatment
programmes.
Terms used
in analysis of
HIV case
surveillance
HIV incidence is the true number of new infections occurring in a
population. See Unit 4 for methods to estimate HIV incidence.
HIV prevalence is the true prevalence of people infected with HIV. See
Unit 4 for methodologies to estimate HIV prevalence.
New diagnoses of HIV includes persons with advanced HIV disease or
AIDS.
New diagnoses of advanced HIV disease includes persons with AIDS. The
term ‘incidence’ may be used to describe the new cases diagnosed with
advanced HIV disease.
New diagnoses of AIDS includes only persons with clinical stage 4 or CD4
count less than 200. The term ‘incidence’ may be used to describe the new
cases diagnosed with AIDS.
Cumulative diagnoses of HIV includes persons with advanced HIV disease
or AIDS. Cumulative diagnoses include all persons diagnosed with HIV
infection since the beginning of the HIV epidemic.
Cumulative diagnoses of advanced HIV disease includes persons with
AIDS. Cumulative diagnoses include all persons diagnosed with advanced
HIV disease (WHO clinical stage 3 or 4, or CD4 count <350 cells/uL)
since the beginning of the HIV epidemic.
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Terms used in analysis of HIV case surveillance, continued
Cumulative diagnoses of AIDS include all persons diagnosed with AIDS
(WHO clinical stage 4 or CD4 count <200 cells/uL) since the beginning of
the HIV epidemic.
Deaths among persons with HIV may or may not be attributable to HIV
disease. If your vital registration system includes cause of death, this is
important information to present. Bear in mind that this may be an underrepresentation of the actual number of deaths due to HIV-related disease.
HIV-related deaths. These are people who died from HIV-related
conditions.
The number of persons living with HIV is a critical number/analysis for
planning purposes. To be able accurately count how many persons are
diagnosed and living with HIV, subtract number of persons who have died
(all causes of death) from all those diagnosed with HIV.
Determining the number of persons living with advanced HIV disease is
important for planning because it tells you how many people may need
HIV care and treatment in the near future. According to WHO
recommendations, these people should be receiving HIV treatment. This
can also be referred to as prevalence of advanced HIV disease.
Determining the number of persons living with AIDS is important because
it tells you how many people currently need treatment. You can look at the
number of PLWA and see how many people are on treatment and assess
whether you are meeting your treatment needs. This can also be referred to
as prevalence of AIDS.
Interpreting
HIV case data
HIV, advanced HIV disease, and AIDS case data should be examined to answer the
following questions:




Are new diagnoses of HIV, advanced HIV disease and AIDS
increasing, decreasing or remaining stable?
Which parishes/regions/counties have the highest number of new
diagnoses of HIV, advanced HIV disease, and AIDS?
What are the differences between parishes/regions/counties where new
diagnoses of HIV, advanced HIV disease and AIDS is low and those
where it is relatively high?
What are the differences between parishes/regions/counties where the
new diagnoses of HIV, advanced HIV disease and AIDS is increasing
and those where it is decreasing or not changing?
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Interpreting HIV case data, continued



What proportion of persons with HIV, advanced HIV disease, and
AIDS are receiving ART?
Are there demographic differences between person receiving ART and
those who are not, among those who need treatment?
What are the most frequent HIV-related opportunistic illnesses and are
these changing over time? This is applicable if data on OI are
collected.
Changes in HIV, advanced HIV disease and AIDS case reports may be
due to factors other than a true decrease or increase in the number of
infections and deaths occurring. Interpret surveillance data to understand
factors that may produce spurious changes. These include:










increases or decreases in the size of the risk population
changes in risk behaviours; these would affect HIV transmission rates,
and HIV, advanced HIV disease and AIDS incidence many years later.
changes in HIV testing and/or other diagnostic procedures
increase in VCT activities—that is, VCT campaigns or outreach
programmes
increases or decreases in the number of healthcare facilities or other
access to care issues (institution of user fees resulting in decreased
clinic attendance)
increase in availability of ART
impact of ART on the slowing of the progression of HIV disease to
advanced HIV disease
adoption of new case definitions
changes in case surveillance practises (for instance, private providers
reporting)
duplicate case reports (that is, more than one report provided for an
individual, leading to counting the person twice)
A number of factors may affect the incidence of advanced HIV disease and AIDS,
including:



past HIV incidence (keeping in mind the time it takes to develop AIDS
after HIV infection)
HIV care provided to persons early in HIV infection may decrease
progression to advanced HIV disease
ART impact on delaying the progression of HIV to AIDS should
decrease AIDS incidence
Because AIDS represents late-stage HIV infection, AIDS incidence rates
do not provide much information on HIV incidence. HIV incidence is the
leading edge of the epidemic.
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HIV/STI Surveillance for CAREC Member Countries
Interpreting HIV case data, continued
Factors that may affect the prevalence of advanced HIV disease and AIDS cases are:


changes in incidence of AIDS due to increased availability of ART
changes in advanced HIV disease and AIDS mortality—for example, a
decrease in AIDS mortality from ART will increase the prevalence of
advanced HIV disease.
Figure 8.1. Reported HIV infections, AIDS cases, and AIDS deaths,
Vietnam, by year of report, 1990 through 1999.
Source: Quan VM, Chung A, Long HT, Dondero TH. HIV in Vietnam: the evolving
epidemic and the prevention response, 1996 through 1999. J Acquir Immune Defic Syndr.
2000;25:311-7.
Discussing
the figure
Look at Figure 8.1 and answer the following questions:
a. What factors may explain the discrepancy in the number of HIV and
AIDS cases between 1992 and 1994 (that is, high numbers of HIV
cases but relatively low number of AIDS cases)?
b. What would you expect to happen to the number of AIDS cases and
deaths in the absence of ART in 2004?
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Data should meet
minimum performance
standards
Before analysis, HIV surveillance data should meet the minimum quality
standards for timeliness and completeness. Additionally, any report or
presentation of the data should include discussion of the quality and
limitations of the data. Data quality standards are listed Unit 5.
For example, when looking at completeness of reporting, you should note
that many Caribbean countries have had AIDS case surveillance from
selected healthcare facilities. HIV-infected patients may be referred from
public clinics to district-level clinics or specific private facilities for
specialised care. This is particularly true for patients who are receiving
ART. In this situation, it is not uncommon for reporting only to be
completed from the public clinic, district and reference private facility. If
cases are reported from a select number of sites, this should be mentioned
in the report. Additionally, methods to estimate the proportion of missing
cases should be considered.
In general, limitations of the data should be mentioned in the report.
Data should meet
confidentiality
requirements
To reduce the risk of inadvertent identification of individuals, it is
essential that data be presented in a way that preserves the confidentiality
of persons in the HIV case surveillance database. Policies for data release
should be guided by knowledge of the overall population characteristics
and distribution, and of the HIV-infected population. Each area should
have a written data release policy that has been reviewed and approved by
the overall responsible party. In all circumstances, the primary
consideration should be to maintain confidentiality in a manner consistent
with making useful data available for local purposes. Data release policies
should consider the purposes for which the data were originally collected,
as well as the purpose of data presentation. Unit 7: Confidentiality and
Data Security provides further details on the confidentiality requirements
for HIV case surveillance data.
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Communicating HIV Data
There are many uses for HIV surveillance data. The analysis,
interpretation and dissemination of information will depend on the needs
of the country for prevention and care and treatment programmes. In
addition, the needs of the donors or scientific community may influence
how the data are analysed and presented. Site-specific summaries should
be provided to major reporting sources on a regular basis. HIV data can
also be useful for presentations to policymakers, civic leaders, and
legislators to help explain the need for services and funding of
programmes.
How data should
be presented
Data can be presented in graphical/tabular format and narrative format.
There are important considerations for presenting data; below are some
minimum standards for graphical/tabular formats.
Standards for
graphical/tabular
data display
All figures must include:





clear titles, including the HIV diagnoses/disease stage and the time
period
labelled axes
data source
footnotes
interpretation (including limitations of data).
Additionally, when presenting HIV case surveillance data, you should
follow local confidentiality procedures for displaying small cell sizes (<
5).
Target
audiences
There are many consumers of HIV information, including:









healthcare providers
other units of the Ministry of Health
National AIDS Programmes
the scientific community
community-based organisations
community planning groups
international donors
policymakers
the general public.
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Report styles
Different audiences require different information and presentation styles,
based on:





their familiarity with the terminology and concepts of surveillance
the action they will take based on the information, perhaps determined
by their position in the HIV public health structure or elsewhere
their interest in specific information, or their interest in comprehensive
information
their motivation to review the data critically
their needs or expectations.
The more organised the report, the more effective it will be in meeting the
objectives.
Formats for Disseminating HIV Data
There are different formats for reporting data to the various audiences. It is
critical that information be shared with those who provided input—
particular, healthcare providers who report HIV cases.
HIV surveillance
report
An HIV surveillance report should be published on a regular basis
(annually at a minimum). The report should include observed trends of the
HIV epidemic, the risk patterns observed, transmission categories, age and
sex distributions, geographic distributions.
Annual
epidemiological
report
The Epi Profile uses strategic information available in the country to
describe and inform on the HIV epidemic. The report provides data from
all HIV/STI surveillance activities (HIV case surveillance, HIV seroprevalence surveys, STI surveillance, etc.) as well as related programme
areas (such as VCT, PMTCT, care and treatment, TB control, etc.).
Fact sheets
Fact sheets are brief descriptions focused on a specific subject. They are
written in simple language and are formatted to convey basic information
on a single topic or subject area. In areas with populations of other
languages, some fact sheets may need to be translated into other languages
(such as Spanish, French and/or Creole). Fact sheets will often include
contact information for follow-up if more in-depth information is desired.
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Fact sheets, continued
Fact sheets can be tailored to address local populations of interest.
Examples include:




sex (men/women)
risk category
age groups (paediatric, adolescents, 50+)
special interest populations (sex workers, homeless, migrant
populations, etc.).
Slide sets and
presentations
Visual presentations of surveillance data are an easy way to convey HIV
surveillance data. Graphic presentations can add interest and impact to
numeric data of comparisons, trends, etc. Slides prepared in PowerPoint
(or a similar programme) can be used for electronic presentations,
imbedded with text in printed reports, or printed as posters/displays. Slide
sets can address similar topics as the fact sheets and should be updated
annually. Examples include:




summary data
geographic distribution
trends (5 or 10 years)
proportions by demographic factors (sex, age, risk).
Types of Analyses
Below are some recommended analyses for HIV surveillance data.
Analyses
for HIV
The term “HIV” refers to five categories of cases:
1. new diagnoses of HIV infection only
2. concurrent diagnoses of HIV infection and advanced HIV disease
3. new diagnoses of HIV infection with later diagnoses of advanced HIV
disease
4. concurrent diagnoses of HIV infection and AIDS
5. new diagnoses of HIV infection with later diagnoses of AIDS.
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Analyses for HIV, continued
It is recommended that data on HIV only be analysed and reported from
areas that have had HIV reporting for long enough to allow for
stabilisation of data collection and monitoring of trends.
Analysis by year of diagnosis: To assess trends in HIV cases, deaths, or
prevalence, it is preferable to analyse and present the data by year of
diagnosis. Analyses by year of diagnosis will reflect what is currently
happening with the epidemic, and eliminate artefacts of reporting in the
surveillance system.
Analysis by year of report: Analyses and presentation of data by year of
report reflects reporting practises of the surveillance system. This does not
reflect newly diagnosed cases or recent infections. By default, when
analysing data by year of report, the data would not be adjusted.
Analyses for
advanced HIV
disease
The term “advanced HIV disease” refers to two categories of cases:
1. new diagnoses of advanced HIV disease
2. concurrent diagnoses of advanced HIV disease and AIDS.
It is important to know the number of persons who have been diagnosed
with advanced HIV disease, since this is the number of people who should
receive care and treatment services.
Analysis by year of diagnosis: To assess trends in advanced HIV disease
cases, deaths, or prevalence, it is preferable to analyse and present the data
by year of diagnosis. Analyses by year of diagnosis will reflect what is
currently happening with the epidemic, and eliminate artefacts of reporting
in the surveillance system.
Analysis by year of report: Analyses and presentation of data by year of
report reflects reporting practises of the surveillance system. This does not
reflect newly diagnosed cases or recent infections.
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Analyses
for AIDS
AIDS represents the end stage of a disease spectrum, and for the reasons
outlined above, is less representative of the current state of the HIV
epidemic. However, it still has value to inform on potential differences in
access to HIV testing and care services.
Analysis by year of diagnosis: To assess trends in AIDS cases, deaths, or
prevalence, it is preferable to present the data by year of diagnosis.
Analyses by year of diagnosis will reflect what is currently happening
with the epidemic, and eliminate artefacts of reporting in the surveillance
system.
Analysis by year of report: Analyses and presentation of data by year of
report reflects reporting practises of the surveillance system. This does not
reflect newly diagnosed cases or recent infections.
Analyses of
deaths among
people with HIV
The term “deaths among people with HIV” refers to two categories:
1.
2.
HIV-related deaths
deaths from all causes among persons with HIV infection.
It is important to know the number of HIV-infected persons who have died.
We need to be able to differentiate between those persons whose deaths
were related to HIV disease and those who died from other causes. Data on
HIV-related deaths can inform us about the access to and impact of care
and treatment programmes. Data on all HIV-infected persons who have
died is key to calculating the number of persons in the population currently
living with the disease.
Analysis by year of death: To assess trends in HIV-related deaths, it is
preferable to present the data by year of death. Analyses by year of death
will reflect what is currently happening with the epidemic, and eliminate
artefacts of reporting in the surveillance system.
Analysis by year of report: Analyses and presentation of data by year of
report reflects reporting practises of the surveillance system. This does not
reflect when people died.
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HIV/STI Surveillance for CAREC Member Countries
HIV Surveillance Report
An HIV surveillance report should be published on a regular basis
(annually at a minimum). In addition to the annual report, medium and
high morbidity areas should also consider publishing summary data on a
quarterly or semi-annual basis. Producing and distributing a routine report
will decrease the number of individual requests for data.
The report can be developed including the following components:
Title or
cover page
A title or cover page is used to announce what is to follow. It extends an
invitation to the reader to read the contents.


The title should describe the content of the report, including the time
period covered.
Information on where the data come from should be included (for
example, HIV case surveillance for Cariba and the office that
produced the report).
Executive summary
An executive summary summarises the entire report in approximately a
page. This is particularly useful for busy officials who may not have time
to read the whole report. Include the salient points, especially
recommendations.
Acknowledgements
An acknowledgements section lists the persons who contributed
significantly to the report and the groups of healthcare providers who
reported cases.
Introduction
The introduction includes a definition of the audience, dates and contents
of previous reports, and statement of objectives/purpose of the report.
Body of the report
The body of the report includes the methodology of how the data were
collected and managed, and the results. This includes:




definitions of terms used in the surveillance report
discussion of the quality and limitations of the data (such as timeliness
and completeness)
narrative interpreting each table and chart so that persons unfamiliar
with the subject matter can interpret the data correctly.
a logical sequence of presentation to ensure clarity for readers
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HIV/STI Surveillance for CAREC Member Countries
Body of the report, continued

separate presentation of data for all HIV diagnoses, cases with
advanced HIV disease, and cases with AIDS, deaths.
The following analyses should be included in the report for HIV, advanced
disease and/or AIDS):

HIV cases, advanced HIV disease and/or AIDS cases diagnosed in
most recent calendar year(s)

number, percentage, and rates of HIV, advanced HIV disease and/or
AIDS cases diagnosed in most recent calendar year by:
o sex
o age group

number and percentage of HIV, advanced HIV disease and/or AIDS
cases diagnosed most recent calendar year by:
o age group and sex
o risk factor and sex

number and percentage of persons living with HIV (including all
stages and CD4 counts) by:
o age group and sex
o risk factor and sex
o race/ethnicity and sex (if applicable)

number and percentage of persons living with advanced HIV disease:
o age group and sex
o risk factor and sex
o race/ethnicity and sex (if applicable)

number of persons living with AIDS:
o age group and sex
o race/ethnicity/sex (if applicable)
o mode of exposure/sex

number of HIV-related deaths by:
o age group
o sex

trends in diagnoses of HIV, advanced HIV disease and/or AIDS
stratified by age and sex and risk factor
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Discussion
The discussion section interprets the data and explains the epidemic and
how it has changed from previous years. It should also address any biases
or limitations to the data. In particular, it should be noted if the data
presented are not complete.
Conclusion
The conclusion reemphasises pertinent findings and integrates these
findings into a comprehensive statement on the state of the epidemic.
Annual HIV Epidemiologic Profile
The Annual Epidemiologic Profile (Epi Profile) describes the HIV
epidemic in various populations in a defined geographic area. It identifies
characteristics of the general population, HIV-infected populations, and
non-infected (and untested) persons whose behaviours place them at risk
for HIV. It consists of information gathered to describe the HIV epidemic
in terms of socio-demographic, geographic, behavioural, and clinical
characteristics. Data sources for preparing the Epi Profile include vital
registration; HIV case surveillance; sero-prevalence surveys; behavioural
surveys; population-based surveys; health facility surveys; HIV
programme data. The Epi Profile serves as a source of quantitative data
from which HIV prevention, care and treatment needs are identified and
priorities set for a given jurisdiction. An Epi Profile is designed to:




provide a thorough description of the HIV epidemic among the various
populations (overall, and sub-populations) in a geographic area
identify characteristics of the general population and of populations
who are living with, or are at high risk for, HIV in defined geographic
areas, and who need prevention or care and treatment services
describe the current status of the HIV epidemic in the geographic area
and provide some understanding of how the epidemic may look in the
future
provide information required to conduct needs assessments and gap
analyses.
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HIV/STI Surveillance for CAREC Member Countries
Recommended Analyses
General population
Demographics—number and percentage distribution of the population by:



age group and sex
race/ethnicity and sex (if applicable)
age group and sex for geographic subunits (for example, parish,
province, region), if applicable.
HIV-infected
population
For the most recent available calendar year (analysis by HIV, advanced
HIV disease and/or AIDS), important information includes:
 the number of cases diagnosed in that year
 the number, percentage, and rates of cases by sex and race/ethnicity (if
applicable)
 the number and percentage of cases by:
o age group and sex
o risk factor/behaviour and sex.
For geographic areas with large numbers of cases, you should determine:
 the number and percentage of cases by:
o age group and sex
o risk factor/behaviour and sex
o geographic sub-unit.
For mortality, determine:
 the number and rates of death, by age group and sex
 the number of deaths by underlying cause among persons age 25-44.
For most recent five-year period, determine:







the annual number of HIV diagnoses
the annual advanced HIV disease diagnoses
the annual number of AIDS diagnoses
the prevalence of HIV cases
the annual number of deaths among persons with HIV
the annual number of HIV cases among perinatally exposed children
annual number of HIV cases among perinatally infected children.
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HIV/STI Surveillance for CAREC Member Countries
At-risk
populations
Data sources for at-risk populations include:










Behavioural Surveillance Surveys (BSS)
Demographic Health Surveys (DHS)
AIDS Indicator Surveys (AIS)
Behavioural Risk Factor Surveillance Surveys (BRFSS) or Risk Factor
Surveillance Surveys
Sexually Transmitted Infections (STI) control programme
Tuberculosis control programme
Data on persons diagnosed with hepatitis infections
Voluntary Counselling and Testing (VCT) programmes/sites
HIV patient monitoring systems
Maternal and Child Health Programmes.
Direct and indirect measures of risk behaviour include:








number and type of sex partners
frequency of condom use
pregnancies amongst young girls/women
STI data, including:
o syndromic surveillance data for the most recent calendar year
o aetiologic surveillance data for the most recent calendar and trends
TB data, including:
o new diagnoses
o concurrent HIV/TB diagnoses
hepatitis data, including:
o new diagnoses
injection drug use and needle sharing
HIV counselling and testing data, including:
o total number of tests
o number/percent positive
o behavioural data (reason for test, etc.).
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HIV/STI Surveillance for CAREC Member Countries
Programme Monitoring Data
Programmes for
prevention of
mother-to-child
transmission of HIV
(PMTCT)
This section should present the number of pregnant women found to be
HIV-infected and the number of HIV transmissions in children born to
HIV-infected mothers.
The report should describe what is being done (or the future plans) to
prevent mother-to-child transmission of HIV in the public and private
sector. It should also describe access to HIV testing in pregnant women
during antenatal care, and use of antiretroviral drug therapy for infected
mothers to prevent infection in their infants.
Analyses should be stratified by age group and include:
 number of women offered HIV counselling and testing
 number of women who accepted HIV testing
 number of women who received their results
 number of women who tested positive for HIV
 number of women who were referred and put on treatment for HIV
 number of women administered NVP/AZT before and during delivery.
HIV patient
monitoring data
Data collected by HIV patient monitoring systems should be included in
reports. Analyses should include:






cumulative number of persons who ever received HIV-related care, by
age group, sex, and care site, and geographic unit
annual trends in the number of persons who ever received HIV-related
care, by age group, gender, and care site, district, or province
number currently receiving HIV-related care, by age group, sex, and
care site, and geographic unit
cumulative number of persons ever started on ART, by age group, sex,
and treatment site, and geographic unit
annual trends in the number of persons who began ART, by age group,
gender, and treatment site, district, or province
number currently on ART, by age group, sex, and treatment site, and
geographic unit.
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HIV/STI Surveillance for CAREC Member Countries
ART treatment
cohort data
The value of cohort data is to measure changes over time. Consequently,
data from these cohorts should focus on annual changes in:





functional status
median CD4 counts or proportion of patients who had CD4 testing
whose counts were > 200 cells/mm3
survival or number of deaths
trends in the number of persons in the cohort living each year
trends in the incidence of selected opportunistic illnesses
Analyses should examine trends in these outcomes in aggregate and by
selected demographic characteristics, such as age group, sex, and
geographic unit.
Persons not
receiving HIV
care and/or
treatment
Some HIV-infected people know their HIV status but are not receiving
HIV care and/or treatment. HIV case surveillance data can help you
estimate the unmet need for HV care and treatment. Comparison can be
made using the number of persons diagnosed with advanced HIV disease
and comparing them to the number of people receiving care and the
number of people receiving treatment. If there are sizable discrepancies
with the number of persons diagnosed with advance HIV disease and the
number of persons on treatment, additional analyses can be undertaken to
look at the characteristics of these persons. It is important to track this in
order to determine the barriers to accessing/receiving treatment as well as
to plan for provision of services. These data can then be used to try to
identify ways to get them into treatment programmes.
Health facility
Surveys
Health facility surveys (such as service provision assessment data) give
information on the services provided by different health facilities, quality
of service provided, and client perceptions of the quality of service
received.
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HIV/STI Surveillance for CAREC Member Countries
Data from other
Agencies
Investigate whether confidential HIV reports can be collected from
programmes that routinely test for HIV, such as the military, prisoners,
insurance and visa applicants and drug rehabilitation programmes.
Include recent estimates of prevalence of HIV/AIDS in your country and
the region developed by CAREC, and briefly describe how such estimates
were derived.
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HIV/STI Surveillance for CAREC Member Countries
Unit 8 Exercises
Warm-up
review
Take a few minutes now to look back at your answers for the warm-up
questions at the beginning of the unit. Make any changes you want.
Small group
discussion
Get into small groups to discuss these questions.
1. Who is responsible for data analysis and reporting at each level, and
what kinds of reports are generated?
2. What was the approximate AIDS incidence in your country in the last
year? Is it increasing, decreasing or remaining stable? Are the trends
the same among the various age groups?
3. Describe the types of reports that are routinely produced using
surveillance data in your country.
4. What do you think will be the effect of HIV case surveillance on the
existing trends for your country?
Apply what
you’ve learned/
case study
Work on this case study independently.
You work in the surveillance unit of Cariba and are responsible for
developing the annual HIV surveillance report. You have data from AIDS
case surveillance nationwide and from a single cohort of patients who
received ART in a large urban clinic. Use this information to answer the
following questions.
1. What data will you include in your report? Describe some of the ways
you might display the data according to the source of the data.
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HIV/STI Surveillance for CAREC Member Countries
Apply what you’ve learned/case study, continued
2. The following table shows the AIDS case incidence rates over seven
years. The rates are per 1 000 population. Use this information to
develop a figure that will represent what you think are the most
important aspects of these data.
AIDS Incidence (per 1000), 1999-2005, Cariba.
Age group (years)
15-19
20-24
>=25
60
150
103
75
160
118
20
29
18
90
155
120
60
162
125
50
140
120
30
88
100
Year
1999
2000
2001
2002
2003
2004
2005
3. What would you write in your report about these data? (That is, what
is your interpretation of these data)?
4. The following table provides information from a clinic that has been
providing ART to patients for a few years. Develop a figure that
displays the data and provide explanatory text to accompany the
figure.
% on
ART
Men
2003
Women
Men
2004
Women
Men
2005
Women
25%
30%
35%
50%
35%
60%
279
Appendix A, References
Appendix A, References
CAREC/PAHO/WHO. Amendment to Caribbean Communicable Disease Surveillance
Manual for Public Health Action. October 2002.
CAREC/PAHO/WHO. Caribbean Communicable Disease Surveillance Manual for
Public Health Action. October 1999.
CAREC/PAHO/WHO. Clinical and Laboratory Guidelines for Dengue Fever and Dengue
Haemorrhagic Fever/Dengue Shock Syndrome for Health Care Providers. February 1998.
CAREC/PAHO/WHO. Guidelines for Upgrading of HIV/AIDS/STI Surveillance in the
Caribbean. The Third Generation Surveillance of HIV/AIDS/STI Linking HIV, AIDS
and Case-reporting, Behavioural and Care Surveillance. May 2002.
CAREC/PAHO/WHO. Laboratory User Manual. June 2002.
CAREC/PAHO/WHO. Managing Laboratories to Assure Quality – “A How-To Guide”:
Module No. 4 - Operational Systems. 2002.
CAREC/PAHO/WHO. Preparing the Annual HIV/AIDS Epidemiological Profile. A
Template for CAREC-Member Countries. February 2005.
CAREC/PAHO/WHO. Public Health Surveillance: A Caribbean Communicable Disease
Surveillance Manual for Action. October 1999.
CAREC/PAHO/WHO. Quality Assurance Workshop Training Manual. 1998.
CAREC/PAHO/WHO. Regional Communicable Disease Surveillance System for
CAREC Member Countries Interim Policy Guidelines. Feb 2005.
CAREC/PAHO/WHO website: www.carec.org
CCH Secretariat. Caribbean Cooperation in Health: Phase II. A New Vision for
Caribbean Health. May 1999.
Centers for Disease Control and Prevention and Council of State and Territorial
Epidemiologists. Technical Guidelines for HIV/AIDS Surveillance Programs, Volume
III: Security and Confidentiality Guidelines. Atlanta, Georgia: Centers for Disease
Control and Prevention, 2006. This document is available at:
http://www.cdc/gov/hiv/surveillance.htm.
CDC Technical Guidelines for HIV/AIDS Surveillance Programs, Volume I: Policies and
Procedures.
A-1
Appendix A, References
CDC/Morbidity and Mortality Weekly Report (MMWR), Guidelines for Evaluating
Surveillance Systems, Douglas N. Klaucke, M.D., et al; and the Surveillance Coordination Group, May 6, 1988.
Global HIV Prevention Working Group.Excerpt from the Executive Summary of New
Approaches To HIV Prevention: Accelerating Research And Ensuring Future Access,
2006. www.gatesfoundation.org and www.kff.org.
International Working Group For Disease Monitoring And Forecasting. CaptureRecapture and Multiple-Record Systems Evaluation I: History And Theoretical
Development. Am J Epidemiol 1995;142:1047-58.
International Working Group For Disease Monitoring And Forecasting. CaptureRecapture and Multiple-Record Systems Evaluation II: Applications In Human Diseases
Am J Epidemiol 1995;142:1059-68.
Multilateral Agreement for the Operation of the Caribbean Epidemiology Centre, January
2001-December 2005.
Tilling K. Capture-Recapture Methods-Useful Or Misleading? Inter J Epidemiol
2001;30:12-14.
WHO. Guidelines for Sexually Transmitted Infections Surveillance. WHO/CHS/HSI/99.2
WHO/CDS/CSR/EDC/99.3
WHO Recommended Surveillance Standards, Second Edition.
(WHO/CDS/CSR/ISR/99.2) October 1999.
WHO. Weekly Epidemiological Record No. 36: 322-326. September 3, 2004. Overview
of the WHO Framework for Monitoring and Evaluating Surveillance and Response
Systems for Communicable Diseases.
WHO Proposals for the Revision of the International Health Regulations.
(http://www.who.int/csr/ihr/en/)
A-2
Appendix B, Abbreviations and Glossary
Appendix B, Abbreviations and Glossary
Abbreviations
AIDS
ARI
ART
BRFS
BSS
CAREC
CARICOM
CCH
CDC
CSF
CSME
CSR
CSW
DALY
DHS
EPI
HIV
ICT
ILEP
KAPB
MSM
MTCT
PAHO
PLWHA
PMTCT
PPT
PYLL
SAC
SPSTI
STI
TB
US
VCT
WHO
Acquired Immune Deficiency Syndrome
Acute Respiratory Infection
Antiretroviral (Drug) Treatment
Behavioural Risk Factor Survey
Behavioural Surveillance Surveys
Caribbean Epidemiology Centre
Caribbean Community and Common Market
Caribbean Cooperation in Health
Centers for Disease Control and Prevention
Cerebrospinal Fluid
CARICOM Single Market and Economy
CAREC Surveillance Report
Commercial Sex Worker
Disability-Adjusted Life Years
Demographic Health Survey
Expanded Programme on Immunization
Human Immunodeficiency Virus
Information and Communication Technology
International Federation of Anti-Leprosy Associations
Knowledge, Attitudes, Practises and Beliefs
Men who Have Sex with Men
Mother-to-Child Transmission
Pan American Health Organization
People Living With HIV or AIDS
Prevention of Mother-to-Child Transmission
Plasma Preparation Tube
Person Years of Life Lost
Scientific Advisory Council
Special Programme on Sexually Transmitted Infections
Sexually Transmitted Infection
Tuberculosis
United States of America
Voluntary Counselling and Testing
World Health Organization
B-1
Appendix B, Abbreviations and Glossary
Glossary
Acquired immunodeficiency syndrome (AIDS): The late stage of HIV infection that
includes development of one or more opportunistic illnesses (illnesses that occur because
of low levels of CD4 lymphocytes, or immunodeficiency).
Active infection: An infection that is currently producing symptoms (disease) or in
which the organism that causes disease is reproducing.
Active surveillance: A system in which health-authority personnel take the lead in
identifying and reporting cases, as opposed to ‘passive surveillance.’
Adherence: The extent to which a patient takes his/her medication according to the
prescribed schedule (also referred to as ‘compliance’).
Aetiologic case reporting: A surveillance system in which a laboratory test has
confirmed the presence of the pathogen.
Aetiological: Refers to the causes of disease. Also known as ‘aetiologic.’
Agent: A factor, such as a micro-organism, chemical substance, or form of radiation,
whose presence is essential for the occurrence of a disease.
Aggregated data: Information, usually summary statistics, that is summed or presented
together to prevent the identification of individuals.
AIDS-defining illness: Any of a series of health conditions that are considered, in
isolation, or in combination with others, to be indicative of the development of AIDS.
These conditions result from low levels of CD4 lymphocytes that are destroyed by HIV.
Algorithm: Step-by-step procedure for decision-making; a recipe for achieving a specific
goal.
Aliquot: A portion of a sample; for example, an aliquot of a 100 millilitre sample of
blood might be a 5 millilitre portion of that sample.
Anonymous: Having no known name or identity. For example, removing all personally
identifying information from a sample that will be tested for HIV, in order to protect the
patient’s identity.
Anti-microbial resistance: The ability of an organism to avoid destruction or
deactivation typically caused by drugs or chemicals designed to do so.
Antibiotic medicines: Drugs that kill or inhibit the growth of bacteria.
B-2
Appendix B, Abbreviations and Glossary
Antibodies: Molecules in the blood or secretory fluids that tag, destroy, or neutralise
bacteria, viruses, or other harmful toxins.
Antimicrobial agents: An agent that kills or inhibits microbial growth. ‘See Antibiotic
medicines’.
Antiretroviral drugs: Drugs used to fight infections caused by retroviruses, such as
HIV.
Antiretroviral drug resistance: Resistance to one or more antiretroviral drugs.
Antiretroviral drug resistance is one of the more common reasons for therapeutic failure
in the treatment of HIV.
Antiretroviral therapy (ART): Treatment with drugs that inhibit the ability of HIV to
multiply in the body.
Area map: A map used as a graph showing variables by geographic location.
Artefact: An inaccurate observation, effect or result caused by experimental error.
Asymptomatic: Without symptoms.
B-lymphocytes: Also known as ‘B-cells.’ Blood cells of the immune system involved in
the production of antibodies. In persons living with AIDS, the functional ability of both
the B and the T lymphocytes is damaged, with the T lymphocytes being the principle site
of infection by HIV.
Bacterial vaginosis: A chronic inflammation of the vagina caused by the bacterium
Gardnerella vaginalis.
Bar graph: A visual display of the size of the different categories of a variable. Each
category or value of the variable is represented by a bar (or column). The Y-axis
represents frequency. The X-axis represents different classes.
BED assay: A simple enzyme immunoassay (EIA) that can be used for detecting recent
HIV-1 infection (within the last 160 days). It uses a branched peptide that includes
sequences from HIV sub-types B, E and D, and allows detection of HIV-specific
antibodies among various subtypes.
Behavioural surveillance: Surveys of HIV-related behaviour that involve asking a
sample of people about their risk behaviours, such as their sexual and drug-injecting
behaviour.
Bias: A systematic error in the collection or interpretation of data.
B-3
Appendix B, Abbreviations and Glossary
Body fluids: Any fluid produced by the human body, such as blood, urine, saliva,
sputum, tears, semen, mother's milk, or vaginal secretions. Fluids that commonly transmit
HIV are blood, semen, pre-ejaculate, vaginal fluids, and breast milk.
Bridging populations: Persons in high-risk sub-populations who interact with people of
lower risk in the general population, making it more likely that the HIV epidemic will
shift from concentrated to generalised.
Candida albicans: The fungal causative agent of vulvovaginitis in women and
inflammation of the penis and foreskin in men.
Carrier: A person or animal without apparent disease who harbours a specific infectious
agent and is capable of transmitting the agent to others.
Case: a condition, such as HIV infection (e.g., an HIV case) or AIDS (e.g., an AIDS
case) diagnosed according to a standard case definition.
Case-control study: A type of observational analytic study. Enrolment into the study is
based on presence (‘case’) or absence (‘control’) of disease. Characteristics such as
previous exposure are then compared between cases and controls. The purpose of case
control studies is to identify factors that are associated with, or explain the occurrence of,
the specific disease or condition being studied.
Case definition: A set of standard criteria for deciding whether a person has a particular
disease or health-related condition, by specifying clinical criteria and limitations on time,
place and person.
Case reporting: A surveillance system in which persons who are identified as meeting
the case definition are reported to public health authorities.
Catchement population: A geographic area that is to be examined or surveyed. Can
refer to the population served by a given clinic.
Categorical surveillance system: System that deals with reporting a single disease.
Categorical variable: Refers to items that can be grouped into categories, such as marital
status or occupation.
Cause of disease: A factor (characteristic, behaviour, etc.) that directly influences the
occurrence of disease. A reduction of the factor in the population should lead to a
reduction in the occurrence of disease.
CD4 count: A measure of the number of CD4 cells in a millilitre (mL) of blood. The
CD4 count is one of the most useful indicators of the health of the immune system and a
marker for the progression of HIV/AIDS.
B-4
Appendix B, Abbreviations and Glossary
CD4 receptors: Markers found on the surface of some body cells, including T-cells.
These receptors are targets of HIV, and thus CD4+ cells are attacked by the virus.
Centers for Disease Control and Prevention (CDC): The US Department for Health
and Human Services agency with the mission to promote health and quality of life by
preventing and controlling disease, injury, and disability.
Chancroid: An acute, sexually transmitted, infectious disease of the genitalia caused by
the bacteria Haemophilus ducreyi. The infection produces a genital ulcer that may
facilitate the transmission of HIV.
Chlamydia trachomatis: The most common sexually transmitted bacterial species of the
genus Chlamydia that infects the reproductive system. Chlamydia infection causes
infection of the cervix of women and the urethra of men and is frequently asymptomatic.
If left untreated, it can cause sterility in women.
Clustered bar chart: A bar chart in which the columns are presented as clusters of subgroups. Also known as ‘stacked bar charts.’
Code: A unique identification for a specimen. It may or may not be linked to any
personal identifying information.
Cohort: A well-defined group of people who have had a common experience or
exposure, who are then followed up for the incidence of new diseases or events, as in a
cohort or prospective study.
Cohort analysis: Analysis that involves following groups of subjects over time.
Completeness of data elements: The extent to which the information requested in the
case report form is provided.
Completeness of reporting: One of several attributes of a surveillance system. The term
refers to the proportion of cases that were reported. Completeness of reporting is also
referred to as the sensitivity of the surveillance system and is determined by using an
alternative (and thorough) method of identifying cases of the disease and then dividing
the number of cases reported by the total number of cases identified. Completeness is
often reported as a percentage.
Compulsory testing: Testing that is required of all individuals in a population to be
surveyed. For example, requiring HIV tests to be done on all members of a prison
population.
Concentrated HIV epidemic: The epidemic state in which HIV has spread to a high
level in a defined sub-population, but is not well-established in the general population.
This epidemic state is characterised by an HIV prevalence that is consistently >5% in at
least one defined sub-population, but <1% in pregnant women in urban areas.
B-5
Appendix B, Abbreviations and Glossary
Confidence interval: The compound interval with a given probability (for example,
95%) that the true value of a variable such as mean, proportion, or rate is contained
within the limits. Also known as ‘confidence limits.’
Confidence limits: See ‘confidence interval.’
Confidentiality: Protecting information that concerns a study participant or patient from
release to those who do not need to have the information.
Consecutive sampling: This sampling method consists of sampling every patient that
meets the inclusion criteria until the required sample size is obtained or the survey period
is over.
Contact: Exposure to a source of an infection, or a person so exposed.
Contagious: The characteristic of an organism or person that renders it capable of being
transmitted from one person to another by contact or close proximity.
Continuous variable: Items that occur in a numerical order, such as height or age.
Convenience sampling: The selection of entities from a population based on
accessibility and availability. The advantage of convenience sampling is that it is easy to
carry out. The weakness is that the findings may not be representative of the entire
community.
Core data elements: Information about a patient that must be collected during a survey.
Cotrimoxazole preventative therapy (CPT): Administering cotrimoxazole prophylaxis
to prevent opportunistic infections among HIV- infected patients.
Cotrimoxazole prophylaxis: A combination of two anti-infection drugs,
sulfamethoxazole and trimethoprim, used to prevent opportunistic infections in patients
with HIV.
Cross-sectional survey: A survey that is conducted at a given point in time, such as
during one year, rather than studying a group over time.
Cryolabel: Labels designed to adhere during freezer storage.
Cryovial: A vial that is designed to be stored in a freezer.
Cumulative cases: the total number of cases of a disease reported or diagnosed during a
specified time. Cumulative cases can include cases in people who have died.
Data dictionary: Electronic files that describe the basic organisation of a project or
database. They contain all of the rules that guide data entry.
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Appendix B, Abbreviations and Glossary
Data entry: The process of entering paper records into a computer database.
Data entry screens: The forms on the computer screen into which a data entry clerk
enters the data.
Database: A computer program that stores the variables for each patient in the survey
sample or surveillance system.
Demographic information: The ‘person’ characteristics of epidemiology (usually
collected with “place” and “time”)—age, sex, race and occupation—used to characterise
the populations at risk.
Denominator: The population (or population experience, as in person-years, etc.) at risk
in the calculation of a proportion or rate. The denominator is the lower portion of a
fraction used to calculate a rate or ratio.
Dependent variable: In a statistical analysis, the outcome variable(s) or the variable(s)
whose values are a function of other variable(s).
Dichotomous variable: A special type of nominal variable that has only two categories,
such as male/female.
Direct transmission: The immediate transfer of an agent from a reservoir to a
susceptible host by direct contact or droplet spread.
Disaggregated data: Data that are divided up according to different variables, to provide
a more detailed analysis.
Disability-adjusted life years (DALYs): A measure of burden of disease in a population
obtained by combining ‘years of life lost’ and ‘years lived with disability.’
Disease burden: The size of a health problem in an area, as measured by cost, mortality,
morbidity or other indicators.
Disease registry: The file of data that contains reported diseases.
Disease reporting: The process by which notifiable diseases are reported to the health
authority.
Distribution: The frequency and pattern of health-related characteristics and events in a
population. In statistics, the observed or theoretical frequency of values of a variable.
Double-entered: Entered twice, to avoid mistakes by identifying and correcting
discrepancies.
B-7
Appendix B, Abbreviations and Glossary
Dysuria: Painful, frequent or difficult urination.
Endemic disease: The constant presence of a disease or infectious agent within a given
geographic area or population group; may also refer to the usual prevalence of a given
disease within such area or group.
Enzyme-linked immunoassay (EIA): A type of test that identifies antibodies to an
organism such as HIV. EIAs rely on a primary antigen-antibody interaction and can use
whole viral lysate of HIV or one or more antigens from the virus.
Enzyme-linked immunosorbent assay (ELISA): A type of enzyme immunoassay (EIA)
to determine the presence of antibodies to an infectious agent such as HIV in the blood or
oral fluids.
Epidemic: The occurrence of a disease (or other health-related event) at a level of
increase to a baseline. For example, the high prevalence of HIV found in many parts of
the world today, including sub-Saharan Africa, Latin America and South and Southeast
Asia.
Epidemiologic profile: A document that describes the HIV/AIDS epidemic in various
populations and identifies characteristics both of HIV-infected and HIV-negative persons
in geographic areas. It is composed of information gathered to describe the effect of
HIV/AIDS on an area in terms of socio-demographic, geographic, behavioural and
clinical characteristics. The epi profile can serve as a basis from which prevention and
care needs are identified.
Epidemiology: The study of the distribution and determinants of health-related states or
events in specified populations, and the application of this study to the control of health
problems.
Epi Info™: A freely distributed epidemiological software available on the CDC website
(www.cdc.gov/epiinfo).
Exclusion criteria: Characteristics of patients who should be excluded from the sample,
but who would otherwise be eligible.
Experimental study: A study in which the investigator specifies the exposure category
for each individual (clinical trial) or community (community trial), then follows the
individuals or community to detect the effects of the exposure.
Factor: An intrinsic factor (age, race, sex, behaviours, etc.) that influences an individual's
exposure, susceptibility, or response to a causative agent.
False positives: Test results that are positive when the patient does not actually have the
disease that is being tested for.
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Appendix B, Abbreviations and Glossary
False negatives: Test results that are negative when the patient actually has the disease
that is being tested for.
Filter paper: Porous paper on which samples can be placed.
Generalised HIV epidemic: The epidemic state in which HIV is firmly established in
the general population. This epidemic state is characterised by an HIV prevalence that is
consistently >1% in pregnant women.
Genital discharge syndrome: This syndrome includes infections due to N. gonorrhoea
and C. trachomatis.
Genital ulcer syndrome: Genital lesions due to T. pallidum, H. ducreyi, HSV, C.
trachomatis or C. granulomatis.
Glycoprotein (HIV): Proteins on the surface of the HIV virus that bind to CD4 receptors
on target cells.
Gonorrhoea: An infection caused by Neisseria gonorrhoeae bacteria. Although
gonorrhoea is considered primarily a sexually transmitted infection, it can also be
transmitted to newborns during the birth process.
Gram-negative: Bacteria that do not absorb the stain during the process of Gram
staining.
Gram-positive: Bacteria that do absorb the stain during the process of Gram staining.
Gram stain: A laboratory method of staining microscopic slides of organisms in order to
identify and classify the various types of bacteria. Bacteria are classified as either Gramnegative (does not absorb the stain) or Gram-positive (absorbs the stain).
Graph: A diagram that shows a series of one or more points, lines, line segments, curves
or areas, representing variations of a variable in comparison with variations of one or
more other variables.
Haemophilus ducreyi: The causative agent of chancroid. See ‘Chancroid.’
Health indicator: A measure that reflects, or indicates, the state of health of persons in a
defined population; for example, the infant mortality rate.
Health information system: A combination of health statistics from various sources,
used to derive information about health status, healthcare, provision and use of services,
and impact on health.
Health-seeking behaviour: The actions individuals or populations take to care for their
health, for example, attending a clinic or district hospital when they feel ill.
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Appendix B, Abbreviations and Glossary
Hepatitis B virus (HBV): The causative agent of hepatitis B. The virus is transmitted by
sexual contact, the use of contaminated needles and instruments, and by contaminated
serum in blood transfusion. The infection may be severe and result in prolonged illness,
destruction of liver cells, cirrhosis or death.
Hepatitis C virus (HCV): The causative agent of hepatitis C. This virus is transmitted
largely by the use of contaminated needles and instruments and by blood transfusions.
The disease progresses to chronic hepatitis in up to 50% of the patients acutely infected.
Herpes viruses: A group of viruses that includes herpes simplex type 1 (HSV-1), herpes
simplex type 2 (HSV-2), cytomegalovirus (CMV), Epstein-Barr virus (EBV), varicella
zoster virus (VZV), human herpes virus type 6 (HHV-6), and HHV-8, a herpes virus
associated with Kaposi's sarcoma.
Herpes simplex virus 1 (HSV-1): A virus that causes cold sores or fever blisters on the
mouth or around the eyes, and can be transmitted to the genital region.
Herpes simplex virus 2 (HSV-2): A virus causing painful sores of the anus or genitals.
While this is a sexually transmitted infection, it may be transmitted to a newborn child
during birth from an infected mother.
High-risk behaviours: Behaviours that increase the risk that a person will contract a
disease.
High-risk group: A group in the community with an elevated risk of disease, often
because group members engage in some form of risky behaviour.
Highly active antiretroviral therapy (HAART): The use of at least three ARV drugs in
combination to suppress viral replication and progression of HIV disease by reducing the viral
load to undetectable levels.
Histogram: A graph that represents a frequency distribution by means of rectangles
whose widths represent class intervals and whose heights represent corresponding
frequencies.
HIV-1: A type of HIV with slight genetic variations from HIV-2. More easily transmitted
than HIV-2.
HIV-2: A type of HIV with slight genetic variations from HIV-1. Less easily transmitted
than HIV-1.
HIV/AIDS case surveillance: The identification and reporting of persons meeting the
HIV and AIDS case definitions to permit public health authorities to track the disease
over time. Also known as ‘HIV/AIDS case reporting.’
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Appendix B, Abbreviations and Glossary
HIV-negative: Showing no evidence of infection with HIV (for example, absence of
antibodies against HIV) in a blood or tissue test.
HIV-positive: Showing indications of infection with HIV (for example, presence of
antibodies against HIV) based on a test of blood or tissue.
HIV sub-types: Distinct lineages of HIV that contain genetic differences.
HIV viral suppression: Lowering the level of HIV RNA in plasma, below the threshold
of detection.
Human immunodeficiency virus (HIV): A retrovirus that causes AIDS by infecting Tcells of the immune system.
Human papilloma virus (HPV): A causative agent of genital warts.
Immune response: The activity of the immune system against foreign substances such as
infectious agents, including bacteria and viruses.
Immune system: The body's complicated natural defence against disruption caused by
invading foreign agents (for example, microbes or viruses).
Immunodeficient: A situation in which a patient’s health is compromised because
his/her immune system is insufficient to ward off infections, thus making the person
susceptible to certain diseases that they would not ordinarily develop.
Immunology: The science of the system of the body that fights infections.
Impact evaluation: An evaluation of a programme that determines what the impact of
the programme is, as opposed to ‘process evaluation.’
Impact indicators: A standardised set of indicators developed by UNAIDS to help
monitor HIV prevalence in particular populations.
Incidence: A measure of the frequency with which an event, such as a new case of
illness, occurs in a population over a period of time. The denominator is the population at
risk; the numerator is the number of new cases occurring during a given time period.
Inclusion criteria: Characteristics required in study participants, in order to be
considered for the sample.
Incubation period: A period of sub-clinical or unapparent pathologic changes following
exposure, ending with the development of the infection.
Independent variable: An exposure, risk factor, or other characteristic being observed or
measured that is hypothesised to influence the outcome (that is, the dependent variable).
B-11
Appendix B, Abbreviations and Glossary
Indicators: Specific data that are gathered to measure how well a prevention or treatment
programme is doing.
Indicator mutations: Genotypic mutations that best predict resistance to a specific
antiretroviral agent.
Indirect transmission: The transmission of an agent carried from a reservoir to a
susceptible host by suspended air particles or by animate (vector) or inanimate (vehicle)
intermediaries.
Infectiousness: The ability of an organism to cause infection.
Infectivity: The proportion of persons exposed to a causative agent who become infected
by an infectious disease.
Informed consent: The permission granted by a patient or a participant in a research
study after he or she has received comprehensive information about a research study or
medical procedure. Informed consent protects the person’s freedom of choice and
respects his or her autonomy with regard to decisions affecting his or her body and
health.
Integrated disease surveillance (IDS): An approach to surveillance in which
communicable diseases are prioritised. Surveillance for all of the high-priority diseases is
conducted in an integrated manner and is initiated at the district level. These diseases
have a high potential for epidemic spread and can be controlled through public health
measures. An example is chlamydia.
Interval width: The range of certainty as to the true value of the calculated outcome
value. For example, in the case of a 95% confidence interval, there is 95% certainty that
the true outcome lies between the upper and lower bound of the interval. Statistically, this
interval is equal to two standard deviations on either side of the calculated outcome
value.
Isolates: A population of bacteria or other cells that has been isolated and cultured.
Isoniazid preventive therapy (IPT): Giving isoniazid to individuals with latent
Mycobacterium tuberculosis infection, in order to prevent the progression to active
disease.
Klebsiella granulomatis: The bacterial causative agent of granuloma inguinale or
donovanosis.
Laboratory-based reporting: A surveillance system in which the reports of cases come
from clinical laboratories.
B-12
Appendix B, Abbreviations and Glossary
Laryngeal TB: Tuberculosis involving the larynx, producing ulceration of the vocal
cords and elsewhere on the mucosa, and commonly attended by hoarseness, cough, pain
on swallowing, and hemoptysis.
Latent period: A period of unapparent infection following exposure to a pathogen,
ending with the onset of symptoms of chronic disease.
Linked anonymous HIV testing: In linked anonymous testing, a person agrees to have
an HIV test, but the specimen is labelled with a code without a name or identifiers that
could reveal the person’s identity. This method is voluntary and requires obtaining
informed consent and making the test results available (with appropriate counselling) to
the person tested.
Linked confidential HIV testing: In linked confidential testing, a person agrees to have
an HIV test with the assurance that the test result will be kept confidential and only
selected health-care providers may be informed. This method is voluntary and requires
obtaining informed consent and discussing the test results with the person. Linked
confidential testing also allows for the collection of more detailed demographic and riskbehaviour information.
Linking: Refers to whether a tested individual’s names or identifying information is
associated with his or her HIV test results.
Low-level HIV epidemic: The epidemic state in which HIV has not reached significant
levels in any sub-population, although HIV infection may have existed for many years.
This epidemic state is characterised by an HIV prevalence that has not consistently
exceeded 5% in any defined sub-population. This state suggests that networks of risk are
rather diffuse or that the virus has only been recently introduced.
Lymphocytes: A type of white blood cell that is involved with fighting infections in the
body. The T lymphocyte is the cell that HIV infects and destroys.
Macrophage cells: Tissue cell derived from monocytes that protect the body against
infections.
Mandatory testing: Testing that is required of a patient if he or she is to obtain certain
services; for example, mandatory HIV testing of individuals who request marriage
certificates.
Margin of error: An estimation of the extent to which a survey’s reported percentages
would vary if the same survey were taken multiple times.
Mean: The measure of central location commonly called the average. It is calculated by
adding together all the individual values in a group of measurements and dividing by the
number of values in the group.
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Appendix B, Abbreviations and Glossary
Microbe: A micro-organism, such as a bacteria or virus.
Microbicide: A chemical or other agent that destroys microbes.
Monitoring: Evaluating a programme’s performance over time.
Monocyte: A type of white blood cell.
Morbidity: Any departure, subjective or objective, from a state of physiological or
psychological well-being.
Mortality rate: A measure of the frequency of occurrence of death in a defined
population during a specified interval of time.
Mortality rate, infant: A ratio expressing the number of deaths among children under
one year of age reported during a given time period, divided by the number of births
reported during the same time period.
Natural history of disease: The temporal course of disease.
Negative controls: Specimens known to be negative and used to ensure that a laboratory
reagent is working properly prior to testing specimens from patients.
Negative predictive value: In HIV testing, the probability that a person with a negative
test result is not infected. Also known as ‘predictive value negative.’
Neisseria gonnorrhoeae: The causative agent of gonorrhoea.
Nominal variable: Variables that represent discrete categories without a natural order,
such as marital status.
Non-vesicular genital ulcer disease: An STI syndrome characterised by ulcers and the
absence of vesicles.
Notifiable disease: A disease for which law or regulation requires reporting to the health
authority.
Numerator: The upper portion of a fraction. In a rate, the numerator is usually the
number of people infected.
Opportunistic infections: Illnesses caused by various organisms infecting
immunodepressed persons that usually do not cause disease in persons with healthy
immune systems. Persons with advanced HIV infection (that is, AIDS) suffer
opportunistic illnesses of the lungs, brain, eyes, and other organs. These illnesses are
referred to as AIDS-defining illnesses or conditions.
B-14
Appendix B, Abbreviations and Glossary
Optical density: The intensity of colour, as measured by a machine in an EIA HIV
antibody test, indicating whether the patient’s sample is HIV-positive.
Ordinal variable: Variables that have a natural order, such as level of education.
Over-sampling: Adding additional members of a sub-group during a survey, in order to
have a sufficiently large sample to get stable estimates of prevalence.
Pandemic: An epidemic occurring over a very wide geographic area (several countries or
continents) and usually affecting a large proportion of the population. HIV is an example
of a pandemic.
Parenteral transmission: Transmission of an infectious agent through blood. Parenteral
transmission of HIV can occur from the sharing of injection drug equipment, from
transfusions with infected blood or blood products, or from needle stick injuries.
Participation bias: Error in results from a study that is due to differences in
characteristics between those who participate in a survey and those who do not. For
example, persons who already know they are HIV-infected may find testing unnecessary;
those who suspect they are HIV-infected may decline testing in order to avoid stigma.
Passive surveillance: A system in which a healthcare provider or worker notifies the
health authority of any cases of these diseases, as opposed to ‘active surveillance.’
Pathogen: A biological agent that causes disease or illness to its host (for example,
bacteria or virus).
Perinatal transmission: Transmission of an infectious agent, such as HIV, from mother
to baby before, during, or after the birth process. Also known as ‘vertical transmission’ or
‘mother-to-child transmission.’
Period prevalence: The amount a particular disease that is present in a population over a
specified period of time.
Pie chart: A circular chart in which the size of each ‘slice’ is proportional to the
frequency of each category of a variable. A pie chart compares sub-classes or categories
to the whole class or category using different coloured slices.
Point estimate: The amount of a particular disease present in a population at a single
point in time. Also known as ‘point prevalence’ or ‘point incidence.’
Population: The total number of inhabitants of a given area or country. In sampling, the
population may refer to the unit from which the sample is drawn, not necessarily the total
population of people.
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Appendix B, Abbreviations and Glossary
Population-based sero-survey: A type of sero-survey that uses a probability sample of a
population defined by geographic boundaries, such as villages or provinces, in order to
obtain a direct measure of HIV prevalence in a general population.
Population sub-group: A group within a population that share certain characteristics or
behaviours.
Positive controls: Specimens known to be positive, as used in proficiency testing, for
example.
Positive predictive value: The probability that a person with a positive test result is
infected; in surveillance this refers to the proportion of cases reported by a surveillance
system or classified by a case definition which are true cases. Also known as ‘predictive
value positive.’
Prevalence: The proportion of persons in a given population with a disease or condition
at a given point in time.
Prevalence assessment: Surveys that determine prevalence of a disease in a population.
Prevalence monitoring: Monitoring prevalence repeatedly over time to track trends.
Priority communicable disease: These are diseases that have the potential for epidemic
spread and can be controlled through public health action. They are the diseases included
in the Integrated Disease Surveillance form.
Probability sampling: A sampling scheme that ensures that each entity in a population
has a known, non-zero chance of being selected.
Process evaluation: An evaluation of a programme that determines how well the
programme is functioning, as opposed to ‘impact evaluation.’
Proficiency panel: A set of samples designed to judge the accuracy and precision of a
laboratory. A necessary component of laboratory quality assurance. In the context of HIV
testing, this may be a group that contains approximately six HIV-negative and HIVpositive (weak to strong) specimens representative of the HIV strains circulating in a
country and of the different stages of HIV infection. The panel should be sent to
participating laboratories once or twice each year for quality assurance testing.
Proficiency testing: The act of sending a proficiency panel to a laboratory, designed to
test the accuracy and precision of that laboratory.
Prophylaxis: Treatment to prevent or suppress infection, often given before a person’s
exposure to the pathogen. For example, the treatment given to mothers during childbirth
in order to prevent infection of the newborn child.
B-16
Appendix B, Abbreviations and Glossary
Proportion: The relationship of a part to the whole, in which the numerator is included in
the denominator; often depicted as a percent by multiplying by 100.
Protocol: The detailed plan for conducting a research study or other activities in which
specific steps are required, including surveillance activities.
Quality assurance: The dynamic and ongoing process of monitoring a system for
reproducibility and reliability of results that permits corrective action when established
criteria are not met.
Quality control: A laboratory’s internal processes for running specimens to ensure that
the test equipment and reagents function properly.
Random sample: A sample derived by selecting individuals such that each individual
has the same probability of selection.
Range: The difference between the largest and smallest values in a distribution.
Rapid HIV test: An HIV antibody test that is simple, does not require any reagents or
equipment other than what is contained in the kit and provides results in less than 20
minutes.
Rapid plasma reagin test (RPR): A common serologic test for syphilis. Specifically, a
non-treponemal test for anticardiolipin antibodies.
Rate: An expression of the frequency with which an event occurs in a defined
population.
Ratio: The quantitative relationship between two or more things; the value obtained by
dividing one quantity by another.
Reference laboratory: A laboratory that functions as a recognised centre of expertise
and standardisation of diagnostic techniques.
Relative risk: A comparison of the risk of some health-related event, such as disease or
death, in two groups. For example, an HIV-uninfected individual who has sexual
intercourse with an HIV-infected person once a year may have a 5% chance of infection.
But if the uninfected individual uses a condom every time, the relative risk when
compared to condom non-use is 15%.
Representative sample: A sample whose characteristics correspond to those of the
original population or reference population.
Representativeness: The extent to which the sample resembles the true population.
B-17
Appendix B, Abbreviations and Glossary
Resistance: The ability of an organism, such as HIV, to overcome the inhibitory effect of
a drug.
Retrovirus: A type of RNA virus that produces reverse transcriptase, which converts
RNA into DNA. HIV is an example of a retrovirus.
Reverse-transcription: The process by which HIV’s genetic material (RNA) is
transformed into DNA, which allows it to fuse with the host’s genetic material (DNA).
Risk: The probability that an event will occur; for example, that an individual will
become ill within a stated period of time.
Risk factor: An aspect of personal behaviour or lifestyle; an environmental exposure; an
inborn, inherited, or demographic characteristic. Associated with an increased occurrence
of disease or other health-related event or condition. For example, injection drug use is a
risk factor for acquiring HIV.
Sample: A selected sub-set of a population. There are specific types of samples used in
surveillance and epidemiology such as convenience, systematic, population-based and
random.
Sample size: The number of subjects to be used in a given study.
Sampling scheme: Procedure for choosing individuals to be included in a sample.
Scale line graph: A graph that represents frequency distributions over time where the Yaxis represents frequency and the X-axis represents time.
Second-generation surveillance: Built upon a country's existing data collection system,
second-generation HIV surveillance systems are designed to be adapted and modified to
meet the specific needs of differing epidemics. This form of surveillance aims to improve
the quality and diversity of information sources by developing and implementing
standard and rigorous study protocols, using appropriate methods and tools. Second
generation surveillance refers to activities outside of those activities generally considered
to be a part of routine case surveillance, such as case reporting and sentinel sero-surveys
and uses additional sources of data to gain additional understanding of the epidemic. It
includes biological surveillance of HIV and other STIs, as well as systematic surveillance
of the behaviours that spreads them.
Selection bias: A systematic error in the process respondent selection for a study or
survey.
Sensitivity: The proportion of persons with disease who are correctly identified by a
screening test or case definition as having disease.
Sentinel case reporting: Reporting cases of a disease from sentinel sites.
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Appendix B, Abbreviations and Glossary
Sentinel populations: Populations that are subject to sentinel surveillance activities.
They may not necessarily be representative of the general population, but rather they
might be the first affected by HIV. Examples include sexually transmitted infection
patients or truck drivers.
Sentinel sites: Sites at which sentinel surveillance activities take place, including clinics
attended by individuals who may or may not be representative of the general population
but are likely to represent groups initially infected or at higher risk for infection than the
general population.
Sentinel surveillance: A surveillance system in which a pre-arranged sample of
reporting sources at ‘watch post’ or ‘sentinel’ sites agrees to report all cases of one or
more notifiable conditions. Often designed to provide an early indication of changes in
the level of disease. Depending on the nature of the population surveyed, these data may
be representative of the general population, or they may simply give more detailed
information about the populations tested.
Sero-conversion: The development of antibodies to a particular microbe. When people
develop antibodies to HIV, they ‘sero-convert’ from HIV-negative to HIV-positive.
Serologic test: A blood test that determines the presence of antibodies to particles such as
viruses. For example, a blood test that detects the presence of antibodies to HIV.
Sero-prevalence: The proportion of a population that is infected, as determined by
testing blood for the appropriate antibody. For example, the proportion of a population
that is infected with HIV, as determined by testing for HIV antibodies in blood samples.
Sero-prevalence surveys: Surveys that estimate HIV prevalence by testing blood for
HIV antibody.
Sero-status: Refers to the presence/absence of antibodies in the blood. For example, the
presence or absence of HIV.
Sero-surveillance: Collecting blood samples for the purpose of surveillance. Latent, subclinical infections and carrier states can thus be detected, in addition to clinically overt
cases. This is especially important in the case of HIV and other STIs, which often have a
long latent period before symptoms are apparent.
Sexual transmission: Transmission of an infectious agent, such as HIV, that occurs
predominately through unprotected vaginal or anal intercourse, and less frequently
through oral intercourse.
Sexually transmitted infection (STI): Diseases that are spread by the transfer of
organisms from person to person during sexual contact.
B-19
Appendix B, Abbreviations and Glossary
Simple random sampling: A sampling method that requires the use of a random number
table or other method (for instance, computer-based) to generate random numbers that
identify the patients to be included in the sample.
Skewed: A distribution that is asymmetrical and does not follow a normal (bell-shaped)
distribution.
Specificity: The proportion of persons without disease who are correctly identified by a
screening test or case definition as not having disease.
Stakeholder group: Those with an interest in the results of surveillance activities.
Includes public health practitioners, healthcare providers, data providers and users,
representatives of affected communities; governments at the district, province and
national levels; members of professional and private non-profit and donor organisations.
Stigma: A mark of disgrace or shame. For example, in some societies, being infected
with HIV causes a person to be stigmatised.
Stratified sampling: Stratified sampling is generally used to obtain a representative
sample when the population is heterogeneous, or dissimilar, where certain homogeneous,
or similar, sub-populations can be isolated (strata). A stratified sample is obtained by
taking samples from each stratum or sub-group of a population.
Sub-population: See ‘population sub-group.’
Sufficient cause: A causal factor or collection of factors whose presence is always
followed by the occurrence of the effect (of disease).
Surveillance: The systematic collection, analysis, interpretation, and dissemination of
health data on an ongoing basis, to gain knowledge of the pattern of disease occurrence
and potential in a community, in order to control and prevent disease in the community.
Surveillance sites: The places from which case reports are obtained. This includes sites
in which universal reporting and sentinel reporting are done. These may be healthcare
facilities or other locations in which sero-surveys are conducted.
Survey protocol: A manual that describes all the steps and tasks involved in a serosurvey.
Susceptible: Vulnerable or predisposed to a disease.
Symptomatic: Exhibiting symptoms.
Symptoms: Any perceptible, subjective change in the body or its functions that indicates
disease or phases of disease, as reported by the patient.
B-20
Appendix B, Abbreviations and Glossary
Syndrome: A group of symptoms as reported by the patient and signs as detected in an
examination that together are characteristic of a specific condition.
Syndromic prevalence: The prevalence of a particular syndrome, or set of symptoms, in
a given population. Usually calculated when testing equipment is not available to verify
the presence of particular pathogen in a laboratory.
Syndromic case reporting: A surveillance system in which a diagnosis of the infection
is made through the presence of symptoms using a standard case definition. Frequently
used for surveillance of sexually transmitted infections in countries in which access to
laboratory testing may be limited.
Syphilis: A sexually transmitted disease resulting from infection with the bacterium
Treponema pallidum. Syphilis can also be acquired by newborns from their mothers
during pregnancy.
Systematic sampling: A sampling method that consists of randomly selecting the initial
patient who meets the inclusion criteria and then selecting every ‘nth’ (for example, third
or fifth) eligible patient thereafter until the predetermined sample size is reached or the
survey period is over.
Systemic: Concerning or affecting the body as a whole.
T-helper lymphocyte: Also known as ‘T-cell.’ Immune cells that seek and attack
invading organisms. HIV enters T-cells through their CD4 receptor proteins, making Tcells virtual HIV-factories.
Table: A set of data arranged in rows and columns.
Testing (HIV) strategy: The use of an appropriate HIV test or combination of HIV tests.
The choice of testing strategy used is based on the objective of the test, the sensitivity and
specificity of the test, and HIV prevalence in the population being tested.
Timeliness of reporting: One of several attributes of a surveillance system. Timeliness
may be defined as the time period between the diagnosis of the disease and the receipt of
a case report form at the health district.
Transmission: Any mode or mechanism by which an infectious agent is spread through
the environment or to another person.
Trend: A long-term movement or change in frequency, usually upwards or downwards.
Treponema pallidum: The bacterial causative agent of syphilis.
B-21
Appendix B, Abbreviations and Glossary
Triangulation: The process of examining several different sets of data, which are
measuring different things, to come up with a better understanding of how and where an
epidemic is spreading. For example, the use of antenatal clinic data, census data, and
registered deaths in order to create a more complete picture of the AIDS burden in a
country.
Trichomonas vaginalis: A sexually transmitted protozoan parasite that causes the vaginal
infection Trichomoniasis, characterised by itching, burning and vaginal discharge. Reinfection is common if sexual partners are not treated simultaneously.
True positives: Test results that are positive when the patient actually has the disease that
is being tested for.
True negatives: Test results that are negative when the patient actually does not have the
disease that is being tested for.
Universal case reporting: A surveillance system in which all persons who are identified
as meeting the case definition for a particular disease are reported. For example, all
persons with HIV who receive care at any healthcare facility are reported. This is in
contrast to sentinel reporting, in which only selected sentinel sites report all persons who
meet the case definition.
Universal precautions: Recommendations issued by CDC to minimise the risk of
transmission of bloodborne pathogens, particularly HIV and HBV, by healthcare and
public safety workers. Barrier precautions are to be used to prevent exposure to blood and
certain body fluids of all patients.
Unlinked anonymous testing: In unlinked anonymous testing, a sample of blood
originally collected for other purposes is tested for HIV after all information that could
identify the source of the blood is eliminated from the sample.
Urethritis: Inflammation of the urethra.
Vaccine: When injected into an individual, a vaccine protects against subsequent
infection by a particular organism or results in a less severe illness should infection
occur. Currently there is no vaccine for HIV.
Validity: The degree to which a measurement actually measures or detects what it is
supposed to measure.
Variable: Any characteristic or attribute that can be measured.
Venereal Disease Research Laboratory test (VDRL): A common serologic test for
syphilis. Specifically, a non-treponemal test for anticardiolipin antibodies.
Vertical surveillance system: See ‘categorical surveillance system.’
B-22
Appendix B, Abbreviations and Glossary
Vertical transmission: See ‘perinatal transmission.’
Vesicular: Pertaining to vesicles or blisters.
Viral load: The amount of HIV in the circulating blood. Also known as ‘viral burden’ or
‘viral dose.’
Viral load test: Test that measures the quantity of HIV in the blood.
Virulence: The relative capacity of an organism to overcome the body’s immune
defences.
Virus: Micro-organisms that typically contain a protein coat surrounding nucleic acid
(RNA or DNA) that are capable of growth only within living cells.
Vital records: Certificates of birth, death, marriage and divorce that are required by law.
Voluntary counselling and testing (VCT): A program that provides both counselling
and testing services to communities, allowing persons who are tested to obtain emotional
and medical support before and after their HIV tests.
Western blot: A type of HIV test, Western blot uses an electroblotting method in which
proteins are transferred from a gel to a thin, rigid support and detected by binding of
labelled antibody to HIV.
Width: See ‘interval width.’
Years of potential life lost: A measure of the impact of premature mortality on a
population, calculated as the sum of the differences between some predetermined
minimum or desired life span and the age of death for individuals who died earlier than
that predetermined age.
B-23
Appendix B, Abbreviations and Glossary
B-1
Appendix C, Useful Links
Appendix C, Useful Links
The Caribbean Epidemiological Centre
www.carec.org
CAREC is a public health information, service and consulting organisation dedicated to
providing information that people need to improve and prevent disease in the Caribbean.
The CAREC Reporting Tool
http://carec.net/index.html
The CAREC reporting tool is a query database that allows public access to AIDS
surveillance data from CAREC member countries.
Cochrane HIV/AIDS Group
An affiliate of the International AIDS Society and the UCSF AIDS Research Institute, the
Cochrane Collaborative Review Group on HIV Infection and AIDS is an international
network of healthcare professionals, researchers and consumers working to prepare,
maintain and disseminate systematic reviews on the prevention and treatment of HIV
infection and AIDS.
www.igh.org/Cochrane/
Centers for Disease Control and Prevention (CDC)
CDC serves as the national focus for developing and applying disease prevention and
control, environmental health, and health promotion and education activities designed to
improve the health of the people of the United States.
www.cdc.gov
Global AIDS Program (CDC)
The Global AIDS Program (GAP) exists to help prevent HIV infection, improve care and
support and build capacity to address the global HIV/AIDS pandemic.
www.cdc.gov/nchstp/od/gap
Division of AIDS and Health and Behavior Research of the National Institute of
Mental Health
The Division of AIDS and Health and Behavior Research (DAHBR) supports research
and research training to: develop and disseminate behavioral interventions that prevent
HIV/AIDS transmission, clarify the pathophysiology and alleviate the neuropsychiatric
consequences of HIV/AIDS infection and use a public health model to reduce the burden
of mental illness
www.nimh.nih.gov/dahbr/dahbr.cfm
Division of HIV/AIDS Prevention (CDC)
The mission of the Division of HIV/AIDS Prevention is to prevent HIV infection and
reduce the incidence of HIV-related illness and death, in collaboration with community,
state, national and international partners.
www.cdc.gov/hiv/dhap.htm
C-1
Appendix C, Useful Links
Division of STD Prevention (CDC)
The Division of STD Prevention provides national leadership through research, policy
development and support of effective services to prevent sexually transmitted diseases
(including HIV infection) and their complications, such as enhanced HIV transmission,
infertility, adverse outcomes of pregnancy and reproductive tract cancer.
www.cdc.gov/std
Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections
In these fact sheets you can find country-specific information on numerous key indicators
relevant to HIV.
www.who.int/hiv/pub/epidemiology/pubfacts
Epidemiological Information on HIV/AIDS from UNAIDS
www.unaids.org/en/HIV_data/Epidemiology/default.asp
Family Health International (FHI)
Family Health International has pioneered ways to curtail the spread of HIV/AIDS. Many
of the HIV prevention "best practises" in use today have emerged from FHI’s work in
more than 60 countries.
www.fhi.org/en/HIVAIDS
Fogarty International Center
The Fogarty International Center promotes and supports scientific research and training
internationally to reduce disparities in global health.
www.fic.nih.gov
The Global Fund to Fight AIDS, Tuberculosis and Malaria
The Global Fund was created to finance a dramatic turnaround in the fight against AIDS,
tuberculosis, and malaria. These three diseases kill more than six million people a year.
This massive scaling-up of resources is already supporting aggressive interventions
against all three.
www.theglobalfund.org
HIV InSite
HIV InSite is developed by the Center for HIV Information (CHI) at the University of
California, San Francisco (UCSF). HIV InSite's mission is to be a source for
comprehensive, in-depth HIV/AIDS information and knowledge.
hivinsite.ucsf.edu
National Center for HIV, STD, and TB Prevention (CDC)
Umbrella organisation at the CDC for the divisions listed above.
www.cdc.gov/nchstp/od/nchstp.html
C-2
Appendix C, Useful Links
National Institute of Allergy and Infectious Diseases (NIAID)
News releases from the NIH's primary AIDS research institute, plus AIDS reagent
programme catalogue and other information.
www.niaid.nih.gov
National Institutes of Health (NIH)
National Institutes of Health is the federal focal point for medical research in the United
States. The NIH, comprising 27 separate institutes and centres, is one of eight health
agencies of the Public Health Service, which, in turn, is part of the U.S. Department of
Health and Human Services. Simply described, the goal of NIH research is to acquire
new knowledge to help prevent, detect, diagnose and treat disease and disability.
www.nih.gov
National Library of Medicine (NLM)
NLM provides a wide variety of resources related to the biomedical and health sciences.
The website has information on how to access the various NLM databases, including how
to establish an account for free access to its HIV/AIDS databases.
www.nlm.nih.gov
NIH Office of AIDS Research (OAR)
NIH’s OAR is located within the Office of the Director of NIH and is responsible for the
scientific, budgetary, legislative and policy elements of the NIH AIDS research
programme.
www.nih.gov/od/oar
Sexually Transmitted Diseases Information from the NLM and NIH
NLM provides a wide variety of resources related to the biomedical and health sciences.
This web site provides a collection of information on STIs, including articles about
prevention, diagnosis, research, and statistics.
http://www.nlm.nih.gov/medlineplus/sexuallytransmitteddiseases.html
Sexually Transmitted Diseases: Journal of the American Sexually Transmitted
Disease Association
Sexually Transmitted Diseases publishes original, peer-reviewed articles on clinical,
laboratory, immunologic, epidemiologic, sociologic, and historical topics pertaining to
sexually transmitted diseases and related fields. Reports from the CDC and NIH provide
up-to-the-minute information. Included in each issue are studies and developments from
around the world.
www.stdjournal.com/
C-3
Appendix C, Useful Links
International Society for Sexually Transmitted Diseases Research (ISSTDR)
The ISSTDR promotes research related to all aspects of sexually transmitted diseases.
The aim of the ISSTDR 2005 is to provide a forum for investigators and policymakers
and to discuss recent advances in research and control of all STIs, including HIV. The
16th biennial meeting of the ISSTDR was held July 10–13, 2005 in Amsterdam, the
Netherlands. The meeting was organised jointly by Dutch and Belgian STD researchers.
www.isstdr.org/
Sexually Transmitted Infections information from Planned Parenthood
This website, maintained by the United States branch of the International Planned
Parenthood Federation, provides basic information about common STIs. The materials
presented are suitable for younger audiences, and include fact sheets and guidelines to
safer sex.
www.plannedparenthood.org/sti/
International Union Against Sexually Transmitted Infections (IUSTI)
IUSTI is the oldest international organisation in the field whose object is the achievement
of international cooperation in the control of sexually transmitted diseases, including HIV
infection. IUSTI is especially concerned not only with the medical aspects but the social
and epidemiological aspects of the control of sexually transmitted diseases and
increasingly HIV/AIDS.
www.iusti.org/
Sexually Transmitted Infections Information From the WHO
This page, maintained by the World Health Organization, provides links to descriptions
of activities, reports, news and events, as well as contacts and cooperating partners in the
various WHO programmes and offices working on this topic. Also included are links to
related web sites and topics.
www.who.int/topics/sexually_transmitted_infections/en/
UNAIDS (Joint United Nations Programme on HIV/AIDS)
As the main advocate for global action on HIV/AIDS, UNAIDS leads, strengthens and
supports an expanded response aimed at preventing the transmission of HIV, providing
care and support, reducing the vulnerability of individuals and communities to HIV/AIDS
and alleviating the impact of the epidemic.
www.unaids.org
UNAIDS/WHO Working Group on Global HIV/AIDS and STI Surveillance
Global surveillance of HIV/AIDS and STIs is a joint effort of the WHO and UNAIDS.
The UNAIDS/WHO working group on global HIV/AIDS and STI surveillance, initiated
in November 1996, is the co-ordination and implementation mechanism for UNAIDS and
WHO to compile and improve the quality of data needed for informed decision-making
and planning at national, regional and global levels.
www.unaids.org/en/HIV_data/Epidemiology/epiworkinggrp.asp
C-4
Appendix C, Useful Links
United States Agency for International Development
USAID is an independent federal government agency that receives overall foreign policy
guidance from the Secretary of State. The agency works to support long-term and
equitable economic growth and to advance U.S. foreign policy objectives by supporting:
economic growth, agricultural and trade, global health, democracy, conflict prevention
and humanitarian assistance.
www.usaid.gov
United States Department of Commerce, U.S. Census Bureau’s International
Programs Center
The International Programs Center, part of the Population Division of the U.S. Bureau of
the Census, conducts demographic and socio-economic studies and strengthens statistical
development around the world through technical assistance, training, and software
products. The IPS maintains an HIV/AIDS Surveillance database, the Monitoring the
AIDS Pandemic (MAP) Network, and a series of HIV/AIDS country profiles.
http://www.census.gov/ipc/www
Veterans Health Administration: Public Health Strategic Health Care Group, AIDS
Information Center
Provides a variety of educational links related to HIV/AIDS care, treatment, policy and
research. Detailed information is also provided on blood exposure and needle stick safety
in healthcare settings as well as treatment guidelines and recommendations.
www.hiv.va.gov/vahiv?page=pt-home
World Bank, The Global HIV/AIDS Program
The Global HIV/AIDS Program was created in 2002 to support the World Bank’s efforts
to address the HIV/AIDS pandemic from a cross-sectoral perspective. The program offers
global learning and knowledge sharing on approaches and best practises to addressing
HIV/AIDS.
http://www1.worldbank.org/hiv_aids/globalprogram.asp
World Health Organization (WHO)
The World Health Organization is the United Nations specialised agency for health.
WHO's objective, as set out in its Constitution, is the attainment by all peoples of the
highest possible level of health. WHO is governed by 192 Member States through the
World Health Assembly. The Health Assembly is composed of representatives from
WHO's Member States.
www.who.int
WHO: Department of HIV/AIDS
The HIV/AIDS Department co-ordinates a strategic, organisation-wide response to the
HIV/AIDS epidemic and enables WHO to provide enhanced technical support in
HIV/AIDS to countries and regional offices.
www.who.int/hiv/en
C-5
Appendix C, Useful Links
WHO HIV/AIDS Programme
WHO and its HIV/AIDS department work within the family of UNAIDS co-sponsors to
facilitate multi-sectoral efforts to respond to the HIV/AIDS epidemic. WHO specifically
serves as the convening agency within the United Nations system for HIV/AIDS
treatment, care and support, as well as for preventing the mother-to-child transmission of
HIV.
www.who.int/hiv
WHO HIV/AIDS Surveillance
A good selection of key HIV/AIDS surveillance reports and documents, including the
following:
New strategies for HIV/AIDS surveillance in resource-constrained countries
Ethical issues to be considered in second generation surveillance
Guidelines for conducting HIV sentinel serosurveys among pregnant women and other
groups
HIV/AIDS Epidemiological Surveillance Update for the WHO African Region 2002
Guidelines for Second-Generation HIV Surveillance
www.who.int/hiv/pub/surveillance
C-6
Appendix D, Answers to Warm-Up Questions and Case Studies
Appendix D, Answers to Warm-Up Questions and Case Studies
Answers are provided in italics for each unit’s warm-up questions and
case study. Answers to the questions within the unit are not included. Unit
questions are designed to stimulate small group discussion among
participants in the workshop or class.
Unit 1 Answers
Warm-up
questions
1. True or false? Almost 40 million people worldwide are infected with
HIV.
True. UNAIDS estimates that 39.4 million adults and children were
living with HIV/AIDS in 2004.
2. What region of the world has been most affected by HIV/AIDS, with
an infection prevalence of over 30% in some countries?
Sub-Saharan Africa. According to UNAIDS, the region is home to 64%
of people living with HIV/AIDS worldwide.
3. Which region of the world has the second-highest HIV prevalence?
The Caribbean is the second-most affected region in the world. In the
Caribbean, AIDS is the leading cause of death among adults (15–44 years)
and claimed an estimated 27 000 [18 000–37 000] lives in 2005.
4. What region in the Caribbean has been most affected by HIV/AIDS?
Hispaniola Island, which includes Haiti and the Dominican Republic,
is the epicentre of the HIV epidemic in the Americas.
5. The major factor that accounts for the prevalence rates of HIV/AIDS
in the Caribbean is:
a.
injection drug use
c. homosexual transmission
d. heterosexual transmission
e. blood exposure from unsafe medical practises
f. all of the above
In the Caribbean, the primary mode of sexual transmission has
changed from being predominantly homosexual to being a mosaic of
homo/bi and heterosexual epidemics. Heterosexual transmission
accounts for the majority of HIV/AIDS cases in the Caribbean.
Injecting drug use is responsible for a minority of HIV infections and
only contributes significantly to the spread of HIV in Bermuda.
D-1
Appendix D, Answers to Warm-Up Questions and Case Studies
Case study
Cariba is a Caribbean nation that had its earliest cases of AIDS recognised
in 1986. Data below are based on estimates of HIV prevalence by parish.
HIV prevalence (%) by parish, Cariba, 1995-2002.
Parish
St. Mary
Kingstown
Arima
St. James
Yotown
1995
1998
.2
0.5
1.0
0.1
0.4
2000
0.5
0.7
2.0
0.7
0.9
2002
1.0
0.9
2.7
2.8
1.3
1.1
0.8
2.9
3.8
1.2
a. What parish has historically had the greatest proportion of its
population infected with HIV?
Arima.
b. What are prominent recent trends?
Prominent recent trends are: continued slow growth in St. Mary and
Arima, levelling off or decrease in Kingstown and Yotown and rapid
growth in St. James.
c. In 2002, which parish had the highest prevalence? Is the epidemic
increasing or decreasing in this parish?
St. James. The epidemic is increasing rapidly.
D-2
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 2 Answers
Warm-up
questions
1. Which body cells does HIV infect?
b. respiratory cells
c. skin cells
d. red blood cells
e. white blood cells
HIV infects white blood cells, which are involved with protecting the
body against infection as part of the immune system. These include
lymphocytes and macrophages.
2. How many major strains of HIV exist?
Two: HIV-1 and HIV-2.
3. Which of the following is not a method of HIV transmission?
a. sexual intercourse
b. casual physical contact
c. blood exchange
d. mother-to-foetus transmission
HIV transmission is transmitted through body fluids, not through
casual physical contact.
4. What type of infectious agent is HIV?
a. bacterium
b. virus
c. prion
d. none of the above
HIV is a virus. HIV stands for ‘human immunodeficiency virus.’
5. True or false? HIV infection and the onset of AIDS occur
simultaneously.
True
False
False. AIDS is characterised by the clinical appearance of symptoms.
It can occur years after the initial HIV infection.
6. Which region of the world has the greatest diversity of HIV sub-types,
making the development of one unique treatment or vaccine difficult?
Sub-Saharan Africa has the greatest diversity of HIV sub-types. This
region has not only the highest HIV prevalence levels, but also the
greatest diversity of sub-types, making treatment especially difficult.
D-3
Appendix D, Answers to Warm-Up Questions and Case Studies
Warm-up questions, continued
7. Which of the following is associated with increased risk of sexual
transmission of HIV?
a. failure to use a male or female condom
b. a greater number of sexual partners
c. a high viral load in an infected partner
d. all of the above
The failure to use a condom allows the virus to pass more easily from
an infected to an uninfected person. The more sexual partners an
individual has, the higher the risk that the one of them is infected with
HIV. A greater amount of virus in the bodily fluids increases the
chances that the virus will be transmitted to the uninfected partner.
8. True or false? The presence of existing sexually transmitted infections
(STIs) increases the risk of acquiring HIV during sexual intercourse.
True
False
True. The inflammation and ulceration caused by existing STIs makes
it easier for HIV to enter the body.
9. List the three main types of antiretroviral drugs used to treat HIV
infection.
a. nucleoside reverse transcriptase inhibitors (NRTIs)
b. non-nucleoside reverse transcriptase inhibitors (nNRTIs)
c. protease inhibitors (PIs)
10. Which of the following fatal opportunistic infections commonly
occur(s) in AIDS patients?
a. herpes zoster
b. fungal infections
c. tuberculosis (TB)
d. all of the above
AIDS patients have weaker immune systems, making it easier for the
patients to acquire these opportunistic infections.
11. True or false? A vaccine for the prevention of HIV infection is
currently available.
True
False
False. While vaccines are being researched and may be available
many years in the future, currently there is no HIV vaccine.
12. True or false? Some STIs, such as chlamydia, are biologically more
easily acquired by young women, making them more susceptible to
HIV infection.
True
False
D-4
Appendix D, Answers to Warm-Up Questions and Case Studies
Warm-up questions, continued
True. Because of their more fragile vaginal walls, young women are
more likely to be infected.
13. Prophylaxis is the term used to describe the treatment to prevent or
suppress infection.
Prophylaxis helps to prevent opportunistic infections from developing
in patients with HIV infection.
Case study
Cariba has experienced rapid expansion of the HIV epidemic. Prevention
programmes to date have focused primarily on prevention of mother-tochild transmission. Examine the data and answer the questions.
Incidence of various STIs over time, Cariba.
2000
Gonorrhoea*
Syphilis*
Reported cases
of urethritis
from STI clinic
HIV incidence
(estimated)
2001
2002
5.0
2.1
2 987
12.8
4.5
3 452
23.5
16.4
6 784
2.0%
4.3%
5.0%
* Cases per 1000, population 15-49 years
a. Do you think that sexually transmitted infections (STIs) may be
playing an important role in the spread of HIV infection? Why?
Yes, it is likely that STIs are playing a major role in the spread of
sexually transmitted HIV in Cariba. It’s likely that STIs are important
in HIV transmission because:
 rates of STIs are high and increasing
 prevalence of HIV is relatively low and incidence is rising.
This is a classic exponential growth phase and similar to the situation
in Mwanza, Tanzania, where STI control was able to show an effect on
HIV incidence.
b. Would an STI prevention programme be an important part of the
country’s HIV control efforts?
Yes, these data suggest that a situation similar to that in Mwanza,
Tanzania exists in Cariba. An enhanced STI control programme may
be critical to decreasing HIV incidence.
D-5
Appendix D, Answers to Warm-Up Questions and Case Studies
Warm-up questions, continued
c. Given the HIV incidence in Cariba, what do you think will happen to
tuberculosis rates in the next several years, and why?
Tuberculosis (TB) rates will likely increase as the HIV epidemic
spreads. TB cases will involve both the appearance of active
tuberculosis among persons already infected with TB, and
transmission of TB from HIV-infected persons to those with and
without HIV infection.
D-6
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 3 Answers
Warm-up
questions
1. Which of the following terms indicates the number or proportion of
persons in a population who have a disease at a given point in time?
a. sensitivity
b. prevalence
c. negative predictive value
d. none of the above
Prevalence is a measure of disease burden in a given population,
while sensitivity and negative predictive value are terms used to
describe the validity of case definitions.
2. True or false? One-time cross-sectional surveys are valid methods of
HIV/AIDS surveillance.
True
False
False. Surveillance systems involve ongoing collection and analysis of
data, not a one-time survey.
3. Match the following terms with their definitions:
_a_ laboratory-based
reporting
_b_ case definition
a. surveillance system in which the
reports of cases come from
clinical laboratories, as opposed
to healthcare practitioners or
hospitals
b. the clinical and laboratory
characteristics that a patient
must have to be counted as a
case for surveillance purposes
4. Which of the following terms indicates the number of persons who
develop a disease within a specified time period?
a. specificity
b. positive predictive value
c. incidence
d. none of the above
Incidence is the rate at which disease burden is increasing in a
particular population, while specificity and positive predictive value
are terms used to describe case definitions.
D-7
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 4 Answers
4.1 Warm-up
questions
1. What are the key differences between HIV sero-surveillance and HIV
case reporting?
HIV sero-surveillance refers to the component of second-generation
HIV surveillance that measures HIV prevalence. HIV serosurveillance measures HIV prevalence in specific populations on a
regular basis using sero-surveys. HIV case reporting refers to the
process of reporting the names or codes of persons with confirmed
HIV positive status to surveillance staff.
2. True or false? HIV testing of women coming in for antenatal care is a
component of HIV case reporting.
True
False
True. HIV testing of women attending antenatal clinics has been the
most frequently used data for prevalence estimates.
3. Which of the following is NOT a purpose of advanced HIV
disease/AIDS case reporting?
a. to determine the burden of disease attributable to advanced HIV
disease/AIDS in the region
b. to assess trends in advanced HIV disease/AIDS cases
c. to provide information on the opportunistic infections associated
with cases of advanced HIV disease
d. to measure HIV incidence
AIDS has a long latent period before symptoms are clinically
apparent. Advanced HIV disease/AIDS case reporting does not
measure incidence of HIV infection.
4. List five key measures that target points for HIV surveillance.
1. HIV incidence (that is, the number or rate of new HIV infections)
2. HIV prevalence (that is, the number or rate of all persons living
with HIV, regardless of how long they have been infected and
whether or not they are aware of their infection)
3. The incidence of advanced HIV disease (or AIDS)
4. The prevalence of advanced HIV disease (or AIDS)
5. Deaths from advanced HIV disease (or AIDS)
D-8
Appendix D, Answers to Warm-Up Questions and Case Studies
4.1 Warm-up questions, continued
5. To capture the leading edge of the epidemic
1. To provide a complete count or estimate of the number of persons
with HIV infection, because AIDS case reporting does not include
asymptomatic HIV-infected persons
2. As a way to measure the effectiveness of treatment programmes
and other interventions.
6. Which stage in the life cycle of HIV requires use of special (not
routine) laboratory tests to measure?
Special laboratory tests are required to detect HIV incidence. The
BED assay is a promising technique to measure HIV incidence in a
single blood specimen. The BED assay identifies persons who were
infected in the last 160 days (or nearly six months.)
4.1 Case study
1. You are the parish surveillance officer in Cariba, which is estimated to
have one of the highest prevalence rates of HIV in the region. The
national AIDS control programme is interested in expanding and
improving its surveillance programme, and the national surveillance
officer is conducting site visits to various parishes to discuss ways of
improving surveillance. During your meeting with the national
surveillance officer, you are asked to suggest additional surveillance
activities in your parish that you believe could be implemented
successfully. Describe the activities you would suggest.
Additional surveillance activities that could be successfully
implemented to expand the AIDS control programme surveillance
system include: using data from HIV testing and prevention of motherto-child programmes to count asymptomatic HIV cases; using data
from treatment and care programmes to supplement HIV case
surveillance data.
2. The national surveillance officer has indicated that there is interest in
using data collected from care programmes, including HIV care
programmes, for HIV case reporting. What programmes would you
suggest using?
Antiretroviral treatment programme data can provide patient
monitoring data. Data from ART programmes can also be used to
measure the effectiveness of treatment programmes and other
interventions. For efficient use of time and resources, those
programmes that serve the largest number of HIV-infected persons
should be targeted for assisting with case reporting.
D-9
Appendix D, Answers to Warm-Up Questions and Case Studies
4.2 Warm-up
questions
3. True or false? In the revised (2006) adult and paediatric WHO HIV
clinical staging systems, there are four clinical stages.
True
False
True. The revised (2006) adult and paediatric WHO HIV clinical
staging systems both include four clinical stages, with stage 1
representing early disease and stage 4 representing late-stage disease
(AIDS). For surveillance purposes, stages 3 and 4 meet the criteria for
reporting.
4. True or false? The revised (2006) WHO case definition for advanced
HIV disease is the same for adults and infants.
True
False
False. Adults and infants may have different clinical manifestations of
advanced HIV disease. Also, serologic evidence of immunosuppression differs between adults and infants. Brief case definitions
of advanced HIV disease are provided below.
For adults, the case definition for advanced HIV disease is:
A positive HIV antibody test
AND EITHER
Any clinical stage 3 or stage 4 disease
OR
Where CD4 testing is available, any clinical stage and CD4 count
< 350 cells/mm3.
For infants, the case definition for advanced HIV disease is:
The presence of HIV infection
AND EITHER
Any clinical stage 3 or stage 4 disease
OR
Where CD4 testing is available, any clinical stage with
CD4 <20% TLC in children aged 12-59 months.
5. List the three options for HIV reporting that WHO recommends.
WHO recommends that countries standardise their reporting
practises.
Countries may:
 report all HIV cases (clinical stages 1-4)
 report advanced HIV disease (clinical stages 3 and 4)
 report AIDS cases (clinical stage 4).
D-10
Appendix D, Answers to Warm-Up Questions and Case Studies
4.2 Warm-up questions, continued
6. True or false? The clinical criteria included in the revised (2006)
WHO advanced HIV infection surveillance case definition only
include definitive diagnoses of clinical events.
True
False
The revised case definitions include both presumptive clinical
diagnoses that can be made in the absence of sophisticated laboratory
tests and definitive clinical criteria that require confirmatory
laboratory tests.
7. List four reasons why HIV clinical staging systems were developed.
1. to provide uniformity for clinical evaluation of persons with HIV
infection
2. to provide an indicator of prognosis
3. to guide clinical management of patients
4. to help study the natural history of HIV infection.
8. True or false? Previous surveillance case definitions in developing
countries focused only on stage 4 (AIDS).
True
False
True. Prior to 1994, the WHO had not developed a surveillance case
definition for HIV disease alone (that is, persons who have HIV
infection but who do not meet the surveillance case definition of
AIDS).
Unit 4.2
Case study
1. As an HIV surveillance officer for Cariba, you are charged with
standardising the country’s HIV reporting practises. What processes
would you implement to ensure that HIV case-based reporting is
standardised?
Processes to ensure that HIV surveillance is standardised include:
 standardising HIV case definitions for surveillance purposes
 using a standardised case report form
 defining the minimum set of information required to report/count
a case
 educating providers regarding reporting requirements,
including laws and regulations, case definitions, specific data
elements, case report forms, laboratory reports and timeliness
of reporting.
2. Cariba recently began providing free antiretroviral therapy to HIVinfected individuals. The country uses the WHO antiretroviral
treatment recommendations to determine the best time to begin
antiretroviral therapy.
D-11
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 4.2 Case study, continued
a. In St. James Parish, CD4 testing is available. What are the WHO
recommendations for when adults and adolescents should begin
ART?
If CD4 testing is available, ART can begin at WHO clinical stage 4
(AIDS) regardless of the CD4 count, at WHO clinical stage 3 in
patients whose CD4 count is <350 cells/mm3 or in patients with
WHO clinical stages 1 or 2 when the CD4 count is < 200
cells/mm3.
b. In St. Mary Parish CD4 testing is not available. What are the WHO
recommendations for when adults and adolescents should begin
ART?
If CD4 testing is not available, a total lymphocyte count ≤1200
cells/ mm3 can be used as an indication of immunodeficiency that is
severe enough to begin ART.
Unit 4 Final
case study
You are the new HIV programme director in Cariba. Cariba has conducted
antenatal sero-surveillance for many years and the results from those
surveys have been used to estimate the HIV prevalence in the country. The
prevalence in young adults in Cariba is estimated to be 3% in urban areas.
HIV case reporting has been recommended, but only a few facilities have
reported HIV cases. Because of the high HIV prevalence, it is assumed that
the prevalence of AIDS is also very high.
Cariba has received additional resources that are to be used for providing
HIV-infected patients with ART. Because of its high prevalence, Yotown
County, which has a large urban area, has been selected as a site to offer
ART. The provision of ART to HIV-infected patients is co-ordinated by
your colleague (Dr. MB) at the Ministry of Health in Cariba. To begin
planning for treating patients you set up a meeting with Dr. MB. Together
you decide that the initial focus should be on conducting reporting of
persons with advanced HIV disease. How would you go about doing this?
In order to determine the number of patients who will need ART, you will
need to know the number of patients with advanced HIV disease. (HIV
clinical stages 3 and 4.) The clinical/immunological criteria for diagnosing
a person with advanced HIV disease are as follows:
D-12
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 4 Final case study, continued
Category
Advanced HIV in infants, children,
adults and adolescents with
documented HIV infection
Children > 6 years, adolescents
and adults with documented HIV
infection
Children < 6 years with
documented HIV infection
Clinical/immunological criteria
 Presumptive or definitive
diagnosis of any one stage 3
or 4 condition (as defined in
annex 2.3 and 2.4).
 CD4 count less than 350/ mm3.



%CD4 < 30 in those less
than 11 months of age
%CD4 < 25 in those aged
12–35 months
%CD4 < 20 in those aged
35–59 months.
Reporting should be done at the time the person is initially diagnosed with
advanced HIV disease.
You and Dr. MB must make decisions regarding how ART should be
provided in Yotown Parish. You both agree to follow the WHO treatment
guidelines. What are the WHO criteria for initiating ART?
The best time to begin antiretroviral treatment can be determined using
clinical staging and, if available, CD4 counts/percents.
The WHO antiretroviral treatment recommendations for adults and
adolescents are as follows:
If CD4 testing is:
Available
Not available
WHO ART recommendation for adults
and adolescents
 WHO clinical stage 4 (AIDS)
regardless of the CD4 count
 WHO clinical stage 3 when the CD4
count is <350 cells/mm3
 WHO clinical stages 1 or 2 when the
CD4 count is < 200 cells/mm3



D-13
WHO clinical stage 4 (AIDS),
regardless of total lymphocyte count
WHO clinical stage 3, regardless of
total lymphocyte count
WHO clinical stages 2 with a total
lymphocyte count < 1200 cells/mm3
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 4 Final case study, continued
You and Dr. MB decide to offer ART at three clinics and at the medical
college in Yotown Parish. How will this affect your plans for advanced
HIV disease case reporting?
The link between staging, ART use and case reporting is useful for
surveillance purposes. HIV case reporting is generally done by healthcare
providers, usually from hospitals and clinics that provide ART. Therefore,
patients who are receiving care at these facilities will have their clinical
stage determined. The clinical/immunological criteria for diagnosing
advanced HIV disease correspond to the clinical/immunological criteria
for initiating ART.
What are some initial steps that should be taken prior to offering ART?
Prior to offering ART, treatment protocols should be developed;
methods to record patient treatment information should be determined;
and staff should be trained. Use of WHO methods is recommended.
What are the outcomes that you think should be monitored in order to
evaluate the impact that ART is having on patients with HIV?
In order to determine how well the programme is working, you will need
to monitor how many patients initiate ART, what regimens they are
receiving, and adherence. To measure the impact that treatment is
having, it is best to monitor the development of new opportunistic
illnesses and death. Effective treatment programmes should result in
declines in both of these.
What methods can be used to measure the impact of ART on mortality?
Ideally, there would be existing mortality data that could be used. If these
are not available, then it is worthwhile to develop methods of obtaining
census data, deaths, and causes of death using verbal autopsy methods.
D-14
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 5 Answers
Warm-up
questions
1. List three aspects of a disease under surveillance that an effective
surveillance system should monitor.
In order to describe the condition under surveillance, the
surveillance system must be able to describe the condition by the
following attributes: person, place and time.
2. List two methods to measure completeness of case reporting.
a. Expand surveillance activities to find (and report) any missed
cases.
b. Estimate the proportion of all cases that were reported in a
specified time period using a capture-recapture methodology.
3. List two methods to report the timeliness of case reporting.
To report the timeliness of case reporting you can use:
a. the median time between diagnosis of HIV or AIDS and receipt
of the case report form
b. the proportion of cases that are received within a specified
time period from diagnosis to receipt of report.
Case study
St. James Parish is in the coastal area of Cariba and has the country’s
major port city. A British university has been conducting studies of
commercial sex workers in the port city for nearly a decade. For the
last five years, they have been conducting serial sero-prevalence
surveys for HIV and syphilis.
You are the National Surveillance Officer for St. James Parish. You
are asked by the Ministry to evaluate these special studies to determine
if the Ministry should take over sponsorship of the studies and include
them in the provincial sentinel surveillance system.
Now answer the questions below. Look back in the unit for more
information if you wish.
a. How would you start your evaluation?
The first step in evaluating these special studies would be to meet
with study staff members and Ministry of Health personnel. The
people conducting the special studies and/or the Ministry of Health
may want to define the questions to be addressed by the
D-15
Appendix D, Answers to Warm-Up Questions and Case Studies
Case study, continued
surveillance system evaluation. They may also want to decide how
to use the findings from the evaluation.
b. On what would you focus in your evaluation?
As the Ministry of Health is deciding whether or not to take over
sponsorship of the studies and include them in the provincial
sentinel surveillance system, a possible focus of the evaluation
would be to assess how the system can detect and report HIV and
syphilis among sex workers and to assess the quality of the
epidemiologic information produced.
c. What criteria would you use to assess the performance of the
system?
In a comprehensive evaluation, the simplicity, flexibility, data
quality, acceptability, sensitivity, positive predictive value,
representativeness, timeliness and stability of the surveillance
system should be assessed. CAREC recommends that member
countries evaluate the completeness (sensitivity), timeliness and
validity of surveillance systems on an annual basis.
d. What would you recommend?
Although specific recommendations depend on the findings of the
assessment, recommendations following an assessment would
include: developing strategies for communicating the findings from
the evaluation, tailoring the recommendations to relevant
audiences, and distributing the results to all partners and sites
involved.
D-16
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 6 Answers
Warm-up
questions
1. True or false? Some elements of an STI surveillance system are more
important for HIV surveillance activities. Others are more important
for STI control programme activities.
True
False
True. For example, combined STI/HIV behavioural surveillance
surveys are important for HIV surveillance, while anti-microbial
resistance monitoring is more important for STI control programmes.
2. True or false? STI surveillance data can serve as an indicator of trends
in HIV risk behaviours.
True
False
True. Because STIs and sexually transmitted HIV are transmitted the
same way, trends in STI data may reflect similar trends in HIV
transmission.
3. True or false? Aetiologic reporting of syphilis (by stage), gonorrhoea
and chlamydia is considered a basic surveillance activity in the
Caribbean.
True
False
False. Aetiologic reporting is only possible where well-developed
systems of laboratory diagnosis exist. In some countries of the
Caribbean, the use of laboratory services for diagnosis is frequently
not available for routine care.
4. Which of the following is not a component of an STI surveillance
system?
a. STI universal case reporting
b. STI sentinel surveillance systems
c. STI testing and treatment
d. STI prevalence assessment and monitoring
While important to controlling the spread of STIs and HIV, treatment
of STIs is not a component of STI surveillance activities.
5. True or false? In generalised HIV epidemics, surveillance activities
should include monitoring gonorrhoea and chlamydia.
True
False
True. These conditions suggest recent high-risk behaviours.
6. True or false? An STI surveillance system includes conditions that are
newly acquired, as well as those that represent past infections.
D-17
Appendix D, Answers to Warm-Up Questions and Case Studies
Warm-up questions , continued
True
False
True. This will help to accurately calculate prevalence and incidence.
7. In aetiologic reporting, STI cases are reported by the specific
microbial organism that caused the STI, while in syndromic reporting,
STI cases are reported by the clinical syndrome with which the patient
presents.
Aetiologic testing involves a well-developed laboratory system.
Therefore, it is less common in the Caribbean region.
Case study
You are the national STI surveillance officer for the Cariba. You rely
primarily on syndromic surveillance using a universal reporting system.
You have noticed an increase in the number of reported cases of male nonvesicular genital ulcer disease in St. James Parish, one of five parishes in
the country.
Number of reported cases of male non-vesicular genital ulcer disease by
parish and year, Cariba.
Parish
Year
1998
1999
2000
2001
2002
2003
40
42
38
54
45
38
St. Mary
60
70
72
84
65
58
Kingstown
47
50
42
40
41
39
Arima
53
87
76
95
107
197
St. James
49
49
36
72
65
48
Yotown
a. What are some possible causes of this increase?
 improved surveillance
 artefact
 increase in health-seeking behaviour by local population
 increase in high-risk behaviour
 immigration
Arima and Yotown, the parishes that border with St. James, are primarily
rural areas, whereas St. James has an urban centre with a recently
refurbished and expanded health centre.
b. Could these differences between the parishes account for the increase
in STI cases in St. James?
Yes. Because of the refurbished and expanded health centre in St.
James, there could be increased health-seeking behaviour in St.
D-18
Appendix D, Answers to Warm-Up Questions and Case Studies
Case study, continued
James. Additionally, people from Arima and Yotown could be
travelling to St. James to receive care.
c. How would you investigate this?
When analysing the data, stratify analysis by region or geographical
area to show if there are significant differences between places.
You examine all syphilis tests done at the clinic for one month. Because
this is a sentinel site for syphilis screening as well, demographic data,
including parish of residence, are available. The table below shows your
findings:
Results of sentinel syphilis screening by parish of residence, Cariba.
Parish of
residence
Arima
St. James
Yotown
Positive
syphilis tests
10
25
3
Total tested
60
150
80
Percentage
positive
16.7
16.7
3.8
d. Calculate the prevalence by parish of residence. How could these data
be used for STI control? For HIV control?
Potential uses of these STI data include:
 estimating the quantity and types of drugs required for treatment of
current and future STI cases
 advocating for resources for STI care
 developing focused interventions for STIs, including HIV
D-19
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 7 Answers
Warm-up
questions
1. True or false? Because of the urgent need to treat and prevent HIV
infection, issues such as confidentiality and informed consent do not
need to be addressed.
True
False
False. Because of the stigma associated with HIV and related
behaviours, infected individuals are vulnerable to social, physical and
legal harms. They need to have their privacy protected through
measures such as confidentiality and informed consent.
2. The principle of ‘beneficence’ refers to minimising risk to individuals
in the areas of:
a.
physical risk
b.
psychological harm
c.
stigmatisation
d.
all of the above
Beneficence refers to balancing the benefits and risks to individuals.
This includes not only physical dangers, but psychological harm and
stigmatisation, as well.
3. True or false? Providing large monetary or in-kind incentives is an
ethical way to ensure that more participants agree to give informed
consent.
True
False
False. With excessive incentives, individuals may decide to participate
for purely economic reasons. This might create bias, since the sample
might then include a larger number of people with high infection rates
who are in greater need of money or healthcare.
4. True or false? In low-level epidemics, information about HIV infection
in high-risk or marginalised groups should be widely publicised to
prevent further spread of the disease.
True
False
False. In the early stages of a low-level epidemic, the general public
may react to information about HIV infection in high-risk groups by
calling for restrictive and prohibitive measures, driving these groups
further underground. Be careful when designing public awareness
programmes during this epidemic state.
D-20
Appendix D, Answers to Warm-Up Questions and Case Studies
Warm-up questions, continued
5. The process by which potential threats to confidentiality are discussed
with subjects before they decide to participate is known as informed
consent.
Giving subjects full information about the study and its potential risks
and benefits helps them to make a more informed decision about
whether to participate.
6. List three potential risks to participants in a behavioural surveillance
study.
Potential risks include identification as a member of a high-risk group,
disclosure of HIV status, identification as HIV-positive, isolation, loss
of employment, prosecution, etc.
7. True or false? Surveillance is an academic exercise. Investigators
should not become involved as advocates in the communities in which
they work.
True
False
False. Investigators can become advocates for the communities they
study, promoting additional treatment and prevention services.
8. List two types of programmes or services that can be developed as a
result of surveillance activities.
Potential services include STI clinics, voluntary testing and
counselling centres, HIV prevention programmes, public awareness
campaigns, etc.
9. If confidentiality about HIV infection is violated, subjects may suffer
discrimination and stigmatisation. They may even be subject to
criminal charges.
Maintaining confidentiality requires protecting the personal
information of study participants, including their infection status. If
this is violated, they may suffer physical, social or legal harms
because of stigma associated with HIV.
10. True or false? In unlinked anonymous testing, informed consent is not
obtained. Some information identifying the sample with the patient
remains.
True
False
False. Informed consent does not need to be obtained because the
survey is anonymous. That is, none of the patient’s personal
identifying information remains on the sample.
D-21
Appendix D, Answers to Warm-Up Questions and Case Studies
Case study
You are the health officer in charge of HIV surveillance for St. James
Parish in Cariba. You have been asked to design and implement a special
sero-prevalence survey among male patients with acute urethritis attending
the STI clinic at the provincial referral hospital.
You are weighing two choices:
 The first would entail a self-administered questionnaire and an
additional blood test for HIV and syphilis.
 The second would entail a blinded survey of all patients who have
blood drawn for syphilis serologies. Approximately 50% of patients
who present with acute urethritis have serum samples drawn for
syphilis; syphilis serologies are done at the clinician’s discretion, and
there is no standard protocol for when to order these serologies.
Now answer these questions.
a. For which option would you need informed patient consent?
You would need informed patient consent for Choice 1, because
this involves procedures that would not be routinely conducted
(interview and separate blood draw). If you wanted to administer
a questionnaire to patients in Choice 2 and link it to their HIV
results, you would need an informed consent for this as well.
b. How likely are the two options to yield an accurate estimate of
the prevalence of HIV infection in this patient population?
It would depend on the participation rate. If you could get most
patients to participate in Choice 1, that would be preferable.
Because syphilis serologies, which are the basis for HIV testing
in Choice 2, are only drawn for 50% of the patients and are
drawn at the discretion of the clinician, they are unlikely to
represent a true random sample of the clinic population.
c. In which option would patient confidentiality be better
protected?
Patient confidentiality would be better protected in Choice 2,
because the patients’ names would not be linked to their HIV
results. On the other hand, patients found to be HIV-infected in
Choice 2 would not necessarily have the opportunity to seek care
for HIV.
d. If you were to offer an incentive (for example, reimbursement for
transportation) to participants in Choice 1, would this be
considered ethical?
Incentives must be modest in order to be ethical. Reimbursing
participants for out-of-pocket expenses incurred in getting to the
study site is a reasonable incentive. Buying them a cow or a
chicken is not.
D-22
Appendix D, Answers to Warm-Up Questions and Case Studies
Unit 8 Answers
Warm-up
questions
1. List three elements of an HIV surveillance report.
Any of the following:
a.
executive summary
b.
introduction
c.
body of the report
d.
discussion
e.
conclusion
2. True or false? The conclusion section of an HIV surveillance report is
an optional element.
True
False
False. The conclusion must be included in order to re-emphasize
pertinent findings and integrate these findings into a comprehensive
statement on the state of the epidemic.
3. True or false? Changes in reporting practises may result in a spurious
increase or decrease in AIDS incidence.
True
False
True. Changes in reporting practises can change the number of cases
reported, but this change is an artefact of reporting and not an
indication of a true change in the epidemic. For this reason, it is
important to pay attention to reporting practises and to investigate any
change in the number of reported cases that seems unlikely to be true.
4. When describing the HIV epidemic, why is it preferable to perform
analysis based on the date of diagnosis rather than the date of report?
Analyses by year of diagnosis will reflect what is currently going on
with the epidemic, and eliminate artefacts of reporting in the
surveillance system.
5. True or false? Increases in the number of persons receiving ART can
result in a decrease in AIDS incidence, regardless of the number of
new HIV infections occurring.
True
False
True. ART can delay the clinical progression of HIV disease, which
means that HIV-infected persons on ART may not develop AIDS, or if
they do, it may take longer than if they were not treated.
D-23
Appendix D, Answers to Warm-Up Questions and Case Studies
Warm-up questions, continued
6. Which of the following are potential target audiences for surveillance
reports on HIV?
a. people who contribute to collecting the surveillance data
b. healthcare workers
c. public health officials at the district, provincial, national and
international levels
d. all of the above
Surveillance reports can be used by the above groups to target or
prioritise services for HIV prevention and patient care; and to
help explain the need for services and funding to policy makers,
civic leaders, and legislators.
Case study
You work in the surveillance unit of Cariba and are responsible for
developing the annual HIV surveillance report. You have data from HIV
case reporting nationwide and from a single cohort of patients who
received ART in a large urban clinic. Use this information to answer the
following questions.
1. What data will you include in your report? Describe some of the ways
you might display the data according to the source of the data.
In the annual HIV surveillance report you should include data on:
HIV, advanced HIV disease and/or AIDS cases diagnosed in most recent
calendar year(s); number and percentage of HIV, advanced HIV disease
and/or AIDS cases diagnosed most recent calendar year (by age group
and sex, transmission category and sex, and transmission category for
each sex group); number, percentage, and rates of HIV, advanced HIV
disease and/or AIDS cases diagnosed by race/ethnicity in most recent
calendar year (if applicable); number and percentage of persons living
with HIV (by age group and sex, transmission category and sex, and
transmission category for each sex group); number and percentage of
persons living with advanced HIV disease (by age group and sex,
transmission category and sex, and transmission category for each sex
group); number of persons living with AIDS (by age group and sex,
transmission category and sex, and transmission category for each sex
group). You should also provide information on trends in new diagnoses
of HIV, advanced HIV disease and/or AIDS stratified by age and sex and
transmission mode.
When presenting data from the cohort of patients receiving ART, you
should focus on annual changes in:
 functional status
D-24
Appendix D, Answers to Warm-Up Questions and Case Studies
Case study, continued




median CD4 counts or proportion of patients who had CD4 testing
whose counts were > 200 cells/mm3
survival or number of deaths
trends in the number of persons in the cohort living each year
trends in the incidence of selected opportunistic illnesses
Analyses should examine trends in these outcomes in aggregate and by
selected demographic characteristics, such as age group, sex, and district
or province.
To assess trends in HIV cases, deaths, or prevalence, it is preferable to
analyse and present the data by year of diagnosis. Analyses by year of
diagnosis will reflect what is currently going on with the epidemic, and
eliminate artefacts of reporting in the surveillance system.
Analyses and presentation of data by year of report reflects reporting
practises of the surveillance system. This is not reflective of newly
diagnosed cases or recent infections. By default, when analysing data by
year of report the data would not be adjusted.
D-25
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
Appendix E, Action Plan for Strengthening Surveillance in
Caribbean Countries
Introduction
To begin the process of operationalising case-based HIV surveillance and
basic STI surveillance, you will need to:
 develop country-specific operational guides for HIV/AIDS/STI
surveillance
 develop country-specific implementation work-plans
 organise your country’s approach to case reporting and regional
reporting.
What is an
action plan?
A well-developed action plan allows you to:
 establish clear goals and objectives
 present your ideas to achieve consensus among all persons
involved
 establish a realistic budget
 ensure that the appropriate staff in each facility are trained on
surveillance
 determine activities
 determine responsible persons
 establish a timeline for completion of activities.
Instructions
Over the next couple of days, you will be developing a draft action plan and
will discuss your action plan with the group.


You will use the Worksheet for Developing an National Plan (Worksheet
1)
Your country Action Plan and presentation, 30 minutes.
E-1
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
National Action Plan Worksheet
Instructions




If you are not doing so already, move now to sit with all the
participants from your country.
As a team, take some time to discuss and fill out the questions on the
National Action Plan Worksheet, next page (facilitator will hand out a
clean version of this form). This worksheet will help you determine the
activities needed to implement your country surveillance activities.
This worksheet will also help us in determining each country’s plans
and schedules, as we will be providing technical assistance where
needed.
We understand that you may not know all the final answers to the
questions in the National Action Plan Worksheet. Please fill in the
information as completely and accurately as possible.
If you have questions, facilitators will be available to discuss the
worksheet process with you.
Timing
Choose a scribe to keep track of your team’s comments on each area of the
worksheet.
Spend about 30 minutes on this worksheet.
E-2
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
WORKSHEET FOR DEVELOPING ACTION PLAN
(WORKSHEET 1)
1. What is the name of your
country?
2. Who are the stakeholders who
will review your plan? Please
provide names, if possible.
MOH:
CAREC:
NGOs:
Donors:
Other:
3. List key persons who will be
working to complete the
actions in the Action Plan and
their position.
Develop contact list with
name, address, phone number,
fax number, e-mail address
and role of each person.

Finalise operational procedures manual:

Finalise test forms:

Co-ordinate training (logistics, materials):

Instructors:
4. List facilities in need of
training.
5. List staff that in need of
training at each facility
(community health nurses,
family welfare educators, data
manager, data entry clerks,
others?)
6. What is the estimated number
of people in need of training?
(multiply the number of
facilities by the estimated
number of persons at each
facility in need of training).
E-3
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
7. What are the best dates to
conduct trainings? List
conflicting meetings/holidays
during which the trainings
cannot be held.
8. Are you aware of any sites
where training can be
conducted? If yes, please list
the name and type of facility
and how many people it can
accommodate at one time.
9. Challenges in implementing
your action plans can include:
 few or no designated trainers
 lack of or conflicting
policies
 lack of needed materials
 schedule conflicts
 lack of money
 turnover/attrition of staff
List your possible challenges
to the right.
10. List resources that you may
be missing.
11. How can CAREC and partner
organisations help you to
implement your plan?
Discuss your worksheet with a facilitator or go on to the next part of the
action planning process.
E-4
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
Action Plan Development
Now use the information from your national worksheet to develop an
action plan. An action plan helps you keep track of all activities and helps
you review your progress. We have provided an action plan template for
your use.
Instructions




Remain in your country group.
Address the key elements listed below.
Add additional elements if you wish.
Work together to develop a PowerPoint presentation that goes with
your action plan.


You will need a calendar for this activity.
Take 30 minutes for this activity.
Timing
Activities
While completing your action plan, please address the key elements listed
below (these activities and general timeframe have been added to the
action plan template next page):
 Identify stakeholders; debrief MOH and NAP (within one month).
 Finalise operational procedures manual (within two months).
 Finalise forms (test forms) (within two months).
 Conduct training of providers and labs (go through case report forms.
and data flow, roles and responsibilities within one month of finalising
forms and operational manual).
 Talk with statistics office to obtain death records (within two months).
 Check national database to make sure it is set up appropriately.
 Train data entry persons (identify back-up).
E-5
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
Activities, continued
You will want to consider other important areas and may add any of these
to your action plan:
 determining budget
 determining final training dates
 selecting the appropriate audience for training
 adapting the training curriculum from existing materials
 organising the training(s) (facility, audiovisual equipment, supplies)
 evaluating the training
 conducting follow-up activities and site visits after the training to
reinforce learning.
If you have other details you would like to add, please go ahead.
Due dates
Adding due dates to an action plan helps you establish a realistic schedule.
Here’s the sequence of events:
 list your activities
 put the activities in the order you (or your team) will do them
 add due dates.
Why have
due dates?
Having due dates:
 provides the overall picture for planning your programme
 helps keep your project on schedule
 avoids assigning too many things to one person
 helps you to meet your program goals and objectives
 helps you to remember critical steps so nothing is forgotten in the
planning process.
E-6
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
How to choose
due dates
When you are developing due dates, think about:
 the order of activities
 which activities are dependent on earlier activities
 the overall timeframe for completing the entire activity
 what factors might cause someone to miss a due date, such as
existing schedules, commitments, holidays, vacation schedules or
any other sources of delay.
It is important to remember to include the people who will be involved
and who will be responsible for meeting the due dates. If they are involved
in the decision-making about key issues, especially deadlines, the team
involved will be more likely to meet those deadlines. Everyone involved
should receive a copy of the agreed to action plan.
Action plan
template
An action plan template is provided on the next page.




You may use the template or any other format you desire.
Use the notes and discussion you had when you filled out your
worksheet.
Change the order of the activities or add additional activities.
Check your calendar to assign realistic due dates for each activity.
Some ‘suggested’ timeframes have been added to the activities. You
may change those if you wish.
Your
presentation



Develop your presentation as you complete the action plan or after it is
done.
Choose a member of your team to present the action plan presentation
to the group.
The facilitators have a slide master, or you may use one of your own.
E-7
National Action Plan: (Your Country and Title of the Plan)
(Worksheet 2)
Activities
1. Debrief MOH and NAP
(within one month)
2. Finalise operational
procedures manual (within
two months)
3. Finalise test forms (within one
months)
4. Conduct training of providers
and labs (within one month of
finalising forms and
operational manual)
5. Talk with Statistics office to
obtain death records (within
two months)
6. Check national database to
make sure it is set up
appropriately
7. Train data entry persons and
back-up staff.
Responsible
Person
Resources
Needed
Challenges/
Solutions
Target Due
Date
Actual
Completion Date
Appendix E, Action Plan for Strengthening Surveillance in Caribbean Countries
8.
9.
10.
11.
12.
13.
14.
15.
16.
Appendix F, Regional Surveillance Indicators and Data
Appendix F, Regional Surveillance Indicators and Data
Indicators
Proportion of reporting sites and countries that submit weekly syndromic reports
 Number of reporting sites reporting on time / Total number of reporting sites
 Number of countries reporting on time / Total number of countries
 Number of countries reporting / Total number of countries
Proportion of reporting sites and countries that submit four weekly disease reports
 Number of reporting sites reporting on time / Total number of reporting sites
 Number of countries reporting on time / Total number of countries
 Number of countries reporting / Total number of countries
Proportion of countries that submit HIV, AIDS and STIs reports annually
 Number of countries reporting on time / Total number of countries
 Number of countries reporting / Total number of countries
Proportion of countries that submit leprosy reports annually
 Number of countries reporting on time / Total number of countries
 Number of countries reporting / Total number of countries
Proportion of countries that submit TB reports quarterly
 Number of countries reporting on time / Total number of countries
 Number of countries reporting / Total number of countries
Data
Number of cases reported by syndrome by country weekly
Number of positive communicable disease tests by syndrome and pathogen weekly
Number of age and sex specific cases reported by disease by country every quarter
Analysis of cases reported by specific diseases (e.g. HIV, AIDS, STIs, leprosy) by
country annually
Number of outbreaks investigated and reported annually
INDICATOR GOALS:
>90% of countries reporting on time and completely by January 2008.
As systems are being revised, the interim goals are:
 > 65% of countries reporting on time and completely by January 2006
 > 80% of countries reporting on time and completely by January 2007
F-1
Appendix G, Regional Reporting Requirements HIV/AIDS and STI
Appendix G, Regional Reporting Requirements HIV/AIDS and STI

HIV, AIDS and selected STIs shall be reported to CAREC on a quarterly basis using
CAREC forms.

CAREC has provided case definitions for HIV, AIDS and the STIs.

Transmit reports to CAREC no later than one month after the end of each quarter.

Complete an annual HIV/AIDS report using the CAREC standard report template.
Submit it by the end of the first quarter of the following year.
G-1