Download Manual for Cancer Registry Personnel

INTERNATIONAL AGENCY FOR RESEARCH ON CANCER
WORLD HEALTH ORGANIZATION
AND
INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES
Manual for Cancer
Registry Personnel
Edited bY
D. Esteban, S. Whelan, A. Laudico and D.M. Parkin
ln collaboration with
D. Badger, S. Gravestock and A.L. Maya
IARC Technical Report No. 10
Lyon, 1995
Published by the lntemational Agency for Research on Cancer'
150 cours Albert Thomas, F'69372 Lyon cédex 08, France
@ lntemational Agency
for Research on Cancer, 1995
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Allrights reserved.
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IARC Llbrary CataloEuing ¡n Publ¡cet¡on Data
tsBN 92 83214242
Manual for Cancer Registry Personnel (1995: Lyon, France)
editors, D- Esteban.-. [et. al.]
(IARC Technical Repods; 10)
1. Data Collection - handbooks
2- Data Collection - methods
3. Registñes - handbooks
4. Registries - methods l. Esteban, D. ll. Series
ISBN 92 8921424
2
(NLM Classification: OZ 39)
Produced in France
EDITORS' AND COLTABORATORS' ADDRESSES
Ms Diane Badger
Statistics Canada
R.H. Coats Building
Tunney's Pasture
Ottawa, Ontario KLA 0T6
Canada
Dr Divina Esteban
Rizal Cancer Registry
Deparment of Health Rizal Medical Centre
Pasig Boulevard, Pasig
Metro Manila 1600
Philippines
Ms Sandra Gravestock
Mersey & Cheshùe Cancer Registry
2nd Floor, Muspratt Building
Universiÿ of Liverpool
PO Box 147
Liverpool L69 3BX
United Kingdom
Ms Sharon L- Wheian and Dr D.M. Parkin
Intemational Agency for Research on Cancer
L50 cours Albert Thomas
69372 Lyon Cedex 08
France
Dr A. Laudico
Manila Cancer Regrstry
Philippine Cancer Society
310 San Rafael
PO Box 3O66
Manila 1O05
Philippines
Ms Alba Lucia Maya
Florida Tumor Registrars Association
North Shore Medical Cente¡ lnc.
1100 N.W. 95 Street
Miami, Florida 33150
USA
I
The edito¡s and their collaborators $atefully acknowledge the
permission of the following to draw uPon or to reProduce their
published material:
American Joint Committee on Cancer, 55 East Erie Street,
Chicago, Illinois 60611, USA, fo¡ the Manual for Staging of Cancer (Thûd Edition)
Margaret Boyd, formerÿ of the P¡ovinciai Cancer HosPitals Board, Edmonton, Alberta,
Canada and the Mise¡icordia Hospital, Edmonton, Alberta, Canada, for the Medical
Têrminology Course
Evelyn Shambaugh of the Surveillance, Epidemiology and End Results (SEER)
Program, Executive Plaza North, Bethesda, Maryland 20892, USA, for the chapter on
Data Presentation
Statistics Canada, Health Statistics Division, R.H. Coats Building,
Tunneÿs Pasture, Ottawa, Onta¡io K1A 0T6, Canada, for the Manual for Cancer
Reco¡ds Officers
Surveillance, Epidemiolory and End Results (SEER) Program, Executive Plaza North,
Bethesda, Maryland 20892, USA, for the SEER SeIf lnstructional Manual for Tumor
Registrars
u
Contents
Chapter
1
Introduction
. 1.1
.
Chapter 2
The diagnosis and teatrnent of cancer
Appendix 2.1
Acronyms and abb¡eviations
Appendtx2.2
Symbols.
Appendix 2.3
Cancerchemotherapeuticagents.
Chapter 3
"""
2'1
"'
2'28
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2.47
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2-48
--.--.3-1
DataCollection...
Appendix 3.1
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Reportabieust...
Chapter 4
3-52
----
Coding.
47
Appendix 4.1
4.32
Summary staging guide.
Appendix 4.2
Instructions for abstracting extent of disease and diagnostic procedures . . . . 4.67
Appendix 4.3
Deûnitions of anatomical sites according to the manual for Staging of
- - - 4.76
cancer of the AmericanJoint Committee on Cancer Staging.
Chapter 5
ln-putprocedures
-.5.1
Chapter 6
....6-1'
Qualitycontol
Chapter 7
7.1
Data presentation .
Chapter
I
Con-ûdentialiÿofmedicalrecords
Chapter 9
MedicalTerminoloryCou¡se.
Chapter 10
.--.8-1
-. -
.----
Bibiiography
Index.
9-3'
lO.L
11.1
ilt
1
lntroduction
lation, in order to understand and so control
the impact of cancer in that population.
Anatysis of the data collected will show how
many cancers thete ale, and which tÿPes are
the most frequent. This will permit studies
to identiÿ the causes of cancer, and at the
same time the registry data can be used to
evaluate the effect of screening programmes
or other activities designed to reduce cancer
incidence in the population, as well as to
study the effect of early diagnosis and of
treatment. The cancer legistry data can also
be used to plan requirements for the personnel, medicai facilities and equipment
needed for the diagnosis and tleatment of
the cancer patient.
The need for data on cancer
It has been estimated that in L985 there
were 7.6 million new cancer cases in the
world, 52o/o of which occurred in the
developing count¡ies (Parkin et al., 1993)The burden of cancer will increase very
rapidly in the next few years, largely due to
an increasing proportion of elderÿpeople in
most countries. In the year 2000, there wÍll
be some 10.5 miliion new cases, and nearly
six million of these will occur in the
developing world. Cancer, which has long
been a maior Problem in the more
developed countries, is now a maior public
health problem in all countries.
In order to undertake any programme of
cancer contol, it is necessary to understand
the br¡¡den of cance¡ in a community. Cancer is not a single disease, it is a term whidt
describes many different diseases. It is not
sufñcient to knord the total number of cancers in a poputation, because Patterns of
occturence vary widely between geographical
¿¡reas, between ethnic SrouPs, by socioeconomic categories, by occupation and by a
wide variety of ctútural factors. So data on
c¿rncer have to show the distibution of the
different tt?es of cancer in a population.
Once the baseline data are established it is
possible to sea¡dr for the aetiological or
causative agents, and establish appropriate
interventions to Prevent the cancers from
developing. Examples of activities to prevent c¿rncer aÍe screening programpg5,
notably for cancer of the cervix (this is
The cancer registry
A registry is simpiy a place where registers or
records of, for example, birttrs, marriages
and deaths are kept. There are many different types of reglstry or register, there are
registries which record information on illnesses other than cancer, and there are
seve¡al types of cancer registry.
The hospital cancer regstry is concemed with
cancer patients from the hospital in whidt it
operates, or ttre group of hospitals fo¡ whidr it
has responsibility. It has a primarily dinicat
function, and the data produced a¡e used to
assess the medical care given to the cancer
patient, to improve treatment regimes, and to
follow the patimt to ensue that drecJ<-up
visits are made reguiarly. The data recorded
will indude extensive dinicai inforsration
whid¡ would not normaliy be collected by a
poprriation-based cance¡ registry', for example
on diagnostic procedures and courses of
therapy. The hospital registry does not distinguish between residents and non-residents
in an area, but collects information on all
patierrts in the hospital irrespective of where
they comefrom.
called secondary prevention, because it prevents cancer from develoPing by removing
it at an earty stage), and education about the
ill-effects of tobacco or the beneûts of healthy eating (primary prevention to stoP the
cancer occurring at all).
The role of the population-based cancer
registry is to collect the data whidt will give
an accurate pichrre of cancer in a popu1
Manual for Cancer Registry Personnel
2
The patholory registry coliects all pathological or histological diagnoses made in a
laboratory and data f¡om such registries
have been used to calcuiate minimum incidence data for areas where no other
information has been avaüable. Again, no
distinction is made between residents of the
area and those who come f¡om elsewhere.
This type of registry will not have compiete
information, because all cases diagnosed
clinically or by a technique other than
pathology will not come to the attention of
the registry, but the quality of the data will
be very good.
The population-based cancer registry (also
called a tumour registry) aims to colþct
information on every case of cancer occt¡rring in a defrned population. In order to
accomplish this tasþ a dearly deiimited
geographical area must be decided and
accurate data on the population living in
this area acquired. Every effort must be
made to exclude patients who do not live in
the designated a¡ea from the incidence data.
It is essential to cover every Potentiai source
of data for residents of the area.
The manual
This manual has been prepared to help
people working in population-based cancer
registries. The different chapters follow the
order of the tasks which have to be
performed by the registry ¡rersonnel,
starting, in Chapter 2, ntith leaming how to
recognise the medical vocabulary used to
describe the s¡rm.ptoms, ttte diagnosis and
the treatment of cancel Chapter 3 intro'
duces the different sources from whidt
information may be found, concentrating
on ttre various hospital departments where
is likely that cancer patients may have
been diagnosed or treated, and presmts the
q?e of data which you should be looking
fo¡ and how to record it.
Once the information has been located and
collected, the data have to be put into a
coded format. The items whidt are used to
produce statistics on cancer incidence are
the site and the t¡pe of cancer, and Chapter
4 gives instructions on how to code the
medical diagnosis. Chapter 5 follows the
steps involved in the management of the
it
data in the cancer registry. The qualiÿ of
the data, with some indicators to show how
it can be monitored, is discussed in Chapter
6. Once t]:e data have been collected, coded
and put together it is imPortant to use all
this information. Chapter 7 gives a description of how data can be analysed and
presented in the form of tables and graphs.
Chapter 8 stresses the need for conûdentiality in the cancer registry and suggests
methods of ensuring that the data are kept
secure.
The manual has been designed for anybody
who comes to $'ork in a registry. You may
have medical trainin& in which case it will
not be necessary to study the section at the
end entitled Medical Terminology Course.
We know that many of the people working
in cancer registries do not have medical
üainin& and we hope that this section will
be of help. It is designed to help you understand human physiology and the terms
which you will come across in the medical
records.
The emphasis throughout is on active
registration. This manual is primarily
designed to help people operating cancer
registries in developing countries, where it is
not possibie to rely on routine notiñcations
and it is necessary to go out and activeiy
search for information on cases in the
hospitals.
The format is loose-leaf, so that additional
matedal can be added by you and so that
separate chapters can be replaced and
updated from time to time.
The Manual is intended as a complement to
the book Cance¡ Regisuation: Principles
and Methods (]ensen et al., 1.991), which
describes the steps involved in planning and
operating a population-based registry. You
should be famüiar with the contents of this
book, and you can also use it as a resource if
you wish to have additional information on
ho\tr to report ttre ¡esults of the registry and
statistical methods.
Acknowledgements
The editors are greatly indebted to Margot
Geesink, Françoise Petit and Aira Romanoff
fo¡ all their work in putting this manuscript
togetheç and to Josephine Thevenoux who
prepared the text for the printer.