Download Internet use in an adolescent rheumatology population

Internet Use In Teens with
Chronic Illness
Peter Chira, MD
Clinical Instructor, Pediatric Rheumatology
Master’s Candidate in Health Services Research
Program
November 30, 2005
Project Overview
This pilot project will
determine the feasibility
of using an online peer
chat group as a means of
increasing support,
knowledge, and wellbeing for teens with
chronic illness,
specifically with
rheumatic diseases. We
hope to accomplish two
major aims.
Project Overview: Specific Aims
Aim 1
• Conduct a descriptive study surveying our
adolescent patient population with regard
to Internet access and use.
• Secondarily, determine characteristics and
reasons for, or against, participation in a
online chat room support group within our
pediatric rheumatic patients with Internet
access.
Project Overview: Specific Aims
Aim 2
• Develop an online support group using a chat room
format and pilot test the feasibility and effectiveness of
this intervention in adolescents with rheumatic disease
using two program formats, unstructured and structured.
• Specifically, we will conduct
1) a randomized case-control study comparing participants in an
unstructured chat room to control patients
2) a comparison study of structured and unstructured chat rooms
3) a prospective cohort study of a structured chat room.
Project Overview: Specific Aims
Aim 2 continued
• Determine feasibility of use of outcome measurements
for health-related quality of life, functional status, and
adolescent transitional readiness for this intervention,
and determine potential effect size.
• Determine degree of sustained interest and chat room
use, knowledge acquisition, quality of interactions
(passive, active), subject interests (general, health
related, social health related), satisfaction with the
program, and increased social interaction with peers with
rheumatic illness.
Background
• Computer-based
technology is becoming a
useful tool in medicine for
providing education,
contacts, and resources.
• Children, notably teens,
are far more familiar than
many adults with using
these instruments as
means of communication,
information gathering,
entertainment, and social
interaction.
Background
• The Kaiser Family Foundation in December
2001 reported that 90% of youth aged 15-24
have gone online and of those who have been
online, 75% have used it to retrieve health
information.
• A recent report found that in a community
sample of teens in New York State, almost 20%
of adolescents have used the Internet as a helpseeking resource for emotional problems.
Background
• In adults, eHealth technology like the use of
interactive health-based websites and electronic
support groups (either chat room, list serve, or
bulletin board) has been beneficial in disease
understanding and management and in effecting
a change in health perception.
• Lorig has demonstrated the benefits of using
online programs for adults with chronic diseases
(like in RA, DM, or chronic back pain) in
reducing health care costs and utilization and
improving quality of life.
Background
• Few studies have focused on the
Internet’s utility in children with chronic
illness as a method of intervention, but
none have focused on their effect on
health outcome and quality of life.
Background
• Addressing the psychosocial aspects of disease
and providing adequate patient education are
integral parts of chronic disease management,
especially in rheumatic illnesses, and improving
areas like patient self-efficacy and coping skills
have direct effects on disease management.
• Studies in adults have shown that psychosocial
types of interventions have beneficial and
sustaining effects on health care costs, health
status, and outcomes.
Background
• Unfortunately, adults who have had chronic
illness since childhood, including those with
juvenile arthritis often develop psychological and
social problems when older.
• Teens with chronic disease who undergo
transfer of care to an adult provider often lack
the skills for disease coping and management,
which can exacerbate these problems
• Recent initiatives have focused on improving this
transition process to ensure continuation of care,
but no methods has been universally adopted or
has been proven effective.
Background
• Studies in pediatric patients have shown support
groups are an effective means of providing
emotional support, psycho-education, adaptation
and skill development, or symptom reduction.
• However, most research about support groups in
pediatric rheumatology have been parentfocused, and there is no information about
benefits for patients themselves.
Background
• During childhood, pediatric patients tend to be
limited in their access to psychosocial services
and have inadequate psychosocial support and
peer networks. They must rely on parents for
transportation, and few facilities and mental
health providers are devoted to their health
service needs.
Background
• With a low incidence of
pediatric rheumatic
disease in the general
population, it is difficult to
form face-to-face support
groups with an adequate
number of participants in
a geographically
convenient location.
• The use of an online
support group may
circumvent these
obstacles and may be an
excellent option to
address some of the
issues previously noted.
Methods Aim 1
• The primary descriptive study consisted of summaries of
questionnaire items inquiring about psychosocial
support, computer and Internet use, demographic data,
and socioeconomic status for all patients ages 12-20
years old attending the pediatric rheumatology clinic at
Lucile Salter Packard Children’s Hospital at Stanford.
• Patients with Internet access were invited to participate
in an online chat room for pediatric rheumatic patients
and were queried about reasons for, or against,
participation by telephone interview. Data from the
interviews are the basis of the secondary descriptive
study and provided variables for the logistic regression
model to determine characteristics of willing participants.
Methods Aim 1
• Patient Population Patients must have attended our clinic for at
least 2 visits and have met ACR criteria for diagnoses of SLE, JRA,
JDM, MCTD, scleroderma, and other inflammatory rheumatic
conditions.
• Variables Questionnaires were filled out by both patient and primary
caretaker and inquired about different variables noted in the next
slide for the 1 descriptive study. The variables for the second part
of this aim are listed in a following slide for the 2 descriptive study.
• Data Management Data were collected and entered into a database
using Microsoft ACCESS.
• Analytic Methods For the descriptive studies, we will use crosssectional descriptive analytic methods. For the regression model
predicting willingness to participate in a chat room, SAS 9 was used
to perform univariate and multivariate analyses.
Variables- aim 1, primary study
Predictor variables
Demographic data
Race
Age
Sex
Grade in school
Socioeconomic status
Type of illness
Length of time since diagnosis
Disease severity
Current medical therapy
Current psychosocial support
Outcome variables
Internet access
Type of access
Locale of access
Home
Own bedroom
Home office
Kitchen
Family/ TV room
School
Work
Friend’s/ relative’s house
Internet use
Frequency of use
Type of Use
Timing of use
Variables- aim 1, secondary study
Predictor
Outcome
General Interest
Parent approval
Time constraints
Proficiency in written English
Interest in meeting new friends
Interest in getting to know more peers with
rheumatic illness
Comfort/ ease in social situations
Interest in computer technology
Interest in chat rooms, list serves, bulletin
boards
Regular computer use for homework
Willingness to participate
Not willing to participate
Statistical methods Aim 1
DESCRIPTIVE
STUDY A
(descriptive analysis)
Pediatric
Rheumatic
patients at
LSPCH
ages 12-20
125 patients
DESCRIPTIVE
STUDY B
(descriptive
and logistic
regression analyses)
Patients
with
Internet
access
Methods Aim 2
Overview
• This part of the study pilot-tested the feasibility
of an online peer chat room for adolescents with
rheumatic disease using two different formats for
the chat room.
• We wanted to assess numbers of actual
participants, frequency of entry, sustainability of
interest, quality of interaction and information
sharing, and non-chat room socializing.
• We also evaluated general satisfaction and
patients’ opinions about the chat room
experience.
Methods Aim 2
Overview continued
• We collected information on outcome measurements for
health-related quality of life (Child Health Questionnaire,
CHQ) and functional status (Childhood Health
Assessment Questionnaire, CHAQ) to determine if they
were easily administered and could evaluate
effectiveness of this intervention.
• Both tools have been studied extensively and could help
to determine if there are any short-term effects, such as
increased mobility and improved self-esteem, from this
intervention that we can then extrapolate the potential
utility of a chat room support group on improving selfefficacy and well-being.
Methods Aim 2
Overview continued
• Additionally, we administered an adolescent transition
readiness assessment tool as a means of evaluating
knowledge and disease understanding.
• This tool evaluates issues viewed as essential for
successful transition to adult services of care and
includes items like knowledge of disease name and
potential complications, as well as understanding
reasons for medications and side effects. It has been
used in clinical settings dealing with adolescent
transition, but has not yet been validated
Methods Aim 2
Patient Population
• Patients with known Internet access (either by
computer at home or school, or an Internet-TV
unit) and willing to participate were eligible for
the chat room as long as they had parental
consent.
• Patients needed to be comfortable in using
English for communication, which over 95% of
our patients fit that criteria.
• Prior experience in Internet use or interactive
venues were not be required.
Methods Aim 2
Patient Population
• A total of 50 patients were supposed to be
enrolled and divided into 2 chat groups of 25, an
optimal size for a chat group.
• All eligible patients for this portion of the study
were to be matched for sex and disease type
resulting in 25 matched pairs.
• One member of each matched pair was to be
randomly assigned to a chat group.
• Unfortunately, the numbers were not adequate
for this matching and split into 2 groups
Methods Aim 2
Intervention and Structure
• The chat room period of activity was to be 3 months long
and we planned to open the chat room twice weekly for
two-hour sessions. With the change in numbers, we only
held one session that was extended to 4 months.
• Patients could chat about any topic during the session.
• The chat room had adult supervision (Dr. Chira) to
assure content appropriateness.
• All participants were required to abide by rules of
conduct.
Methods Aim 2
Intervention and Structure
• The chat room site was secure, requiring log-in and
password entry. We tracked all sign-ins and time spent
in the chat room, and obtained full transcripts of all chat
sessions to analyze for content and quality of discussion
(i.e. health-related, school, social, etc).
• Prior to starting the study, and after each 3-month chat
session, all patients were to fill out the CHQ, CHAQ, and
the adolescent transition assessment questionnaire.
Again with the change in numbers, they only filled these
out pre- and post- chat room
• Parents also will fill out the parental version of the CHQ.
Methods Aim 2: original design
CHAT 1
(unstructured)
Willing to
participate
in chat room
Plus exit questions
CHQ, CHAQ, transition questions
CHAT 2
(control)
CHQ, CHAQ, transition questions
CHAT 2
(structured)
CHQ, CHAQ, transition questions
Plus exit questions
Methods Aim 2
Intervention and Structure
• With the change in participants, we changed the
structure of the chat room to initially have an
unstructured format for the first 2 months
described for the Chat 1 group, and then to
structure it with the 2nd two months as in the
Chat 2 group.
• Patients still filled out outcome questionnaires as
previously described prior to and after the chat
intervention, with additional questions also
assessing if patients liked one format over the
other.
Methods Aim 2: redesign
Willing to
participate
in chat room
CHAT GROUP
unstructured
Administer CHQ,
CHAQ, & transition tool
CHAT GROUP
(structured)
Administer CHQ, CHAQ,
transition tool, and exit
questions
Methods Aim 2
Variables
• Predictor and outcome variables for the
evaluation of aim 2 are listed in the next slide.
• Feasibility focused on evaluating number of
eligible patients actually participating, level of
engagement during chat sessions, sustainability
of interest, and ability to collect data on outcome
tools like the CHQ, CHAQ, and other areas.
Methods Aim 2
Predictor
Number of times entered chat room
Time spent in online chat room
Active participation
Passive observation
Content of chat room
Health-related
Family
School
Work
Social
Other
Medical therapy changes
Psycho-social interventions other than chat
room
Demographic data
Socioeconomic status (Hollingshead index(1))
Type of illness
Length of time since diagnosis
Disease Severity
Outcome
Primary outcome
CHQ: as a whole measure and its individual
components listed below
Physical functioning
Role/ social emotional
Role/ social behavioral
Role/ social-physical
Bodily pain
General behavior
Mental health
Self esteem
General health perceptions
Change in Health
Family activities
Family cohesion
Parental impact-time
Parental impact-emotional
CHAQ
Change in Transition tool score
Secondary outcomes
Satisfaction with the program
Level of interaction with others in group
outside of chat room
Email exchange
Meeting physically
Telephone conversations
Perceived knowledge about illness
Willingness to recommend the chat room
Willingness to participate again
Increased interaction with peers who have
rheumatic illness
not measured in the child-completed version of the CHQ
*areas we expect to see an impact with the online chat room
Methods Aim 2
Data Management
• Data was collected and entered into a database using Microsoft
ACCESS.
Analytic Methods
• SAS 9.0 will be used to interpret the data
• Descriptive analyses will be done to evaluate participant
characteristics
• 2 sample t- tests will be used to compare the difference in outcome
measurements for patients who participated in the chat room
compared to those who did not. Also, if possible, we will try to
analyze pre- and post- intervention outcomes for participants with
one sample t-tests.
• Qualitative analytic techniques will be used to assess quality and
type of patient interactions
Results Aim 1
• 101 consecutive patients completed the
questionnaire from Nov 02 to Apr 03
during routine rheumatology visits.
• 97 parents also completed questionnaires.
• Patient ages were between 12 and 20
years old. Mean age was 15.2 years old
+/- 2.2 years.
• Parental mean age was 43.7 +/- 6.3 years.
Results Aim 1
Age
range
12-20 years
Mean, S.D.
15.2, 2.2 years
Male
27 (27%)
Female
74 (73%)
Ethnicity
Caucasian
34 (33.7%)
(self-reported)
Asian
23 (22.8%)
Hispanic, Latino
24 (23.7%)
African American
1 (1.0%)
Native American
1 (1.0%)
Multi-racial or other
18 (17.8%)
SLE
28 (27.7%)
JRA
27 (26.7%)
SPONDY
9 (8.9%)
SCL / MCTD
8 (7.9%)
APL
6 (5.9%)
VASC
6 (5.9%)
JDM
4 (4.0%)
other
13 (12.9%)
Sex
Diagnosis
Results Aim 1, primary study
In surveying psychosocial support systems
• Most patients had discussed their disease with another
individual (93%)
• The majority had talked with their parents (81%), or their
friends (65%).
• Only 7% had spoken with another child with a similar
rheumatic disease.
• 78% of our teens wanted to meet peers with similar
rheumatic diseases.
• 84% of parents concurred that it would be helpful if their
child met others with similar rheumatic disease.
Results Aim 1
Figure 1 Types of psychosocial support utilized
10 0 %
90%
80%
70%
60%
50%
40%
30%
20%
10 %
0%
e v e r s po k e n wit h
a nyo ne a bo ut
illne s s
wit h pa re nt s
wit h f rie nds
wit h o t he r k ids
wit h rhe um a t ic
dis e a s e
wit h
rhe um a t o lo gis t
girls n=7 3
0 .9 7
0 .8 8
0 .7 4
0 .1
bo ys n=2 8
0 .8 2
0 .6 4
0 .4 3
0
t o t a l n=10 1
0 .9 3
0 .8 1
0 .6 5
0 .0 7
girls n=7 3
wit h
ps yc ho lo gis t
wa nt t o m e e t
k ids wit h
rhe um a t ic dz
0 .2 3
0 .19
0 .8 2
0 .14
0 .0 7
0 .7 1
0 .2 1
0 .16
0 .7 8
wit h P M D
wit h s c ho o l
c o uns e lo r
0 .5 6
0 .7
0 .4 6
0 .4 6
0 .5 3
0 .6 3
bo ys n=2 8
t o t a l n=10 1
Results Aim 1
Figure 2 Computer and internet access
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
total n=101
computer use
home computer
internet use and access
home internet access
1
0.93
0.91
0.79
total n=101
Results Aim 1
Figure 3 Types of computer and internet use
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
email
IM
chat
bulletin
board
girls n=73
0.88
0.73
0.34
0.23
0.6
boys n=28
0.68
0.61
0.29
0.14
0.61
total n=101
0.82
0.69
0.33
0.21
0.6
0.61
offline games online games
girls n=73
homework
surf
shop
info look up
downloads
0.6
0.95
0.86
0.33
0.77
0.74
0.64
0.86
0.75
0.21
0.61
0.68
0.92
0.83
0.3
0.72
0.72
boys n=28
total n=101
Results Aim 1
While online
• 82% of teens used
email to interact with
others
• 69% instant
messaged
• 21% used email
bulletin boards
• 33% had entered a
chat room
Parental computer use
• 90% of parents had
used a computer
• 85% had been online,
• 72% used email to
communicate
Results Aim 1
• Only 47% of teens had used the Internet to learn
about their rheumatic illness, and 35% had gone
online for other health issues.
• In contrast, 68% of the parents had used the
Internet to research their child’s illness.
• Almost all patients ( 88%) and parents (95%)
wanted a website where they could obtain more
information about childhood rheumatic disease.
Results Aim 1
Figure 4 Online health searches
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
other health
info on rheumatic
problems (acne,
disease
diet, etc)
teen issue- sex
teen issuesmoking
teen issue- drugs
teen issuemental health
teen issueviolence
interest in
reliable peds
rheum site
girls n=73
0.51
0.38
0.15
0.14
0.16
0.15
0.11
0.92
boys n=28
0.36
0.04
0
0
0
0
0
0.79
total n=101
0.46
0.29
0.11
0.1
0.12
0.11
0.08
0.88
girls n=73
boys n=28
total n=101
Results Aim 1, secondary
Telephone follow-up
questionnaires have been
administered to 61 patients,
aged 13-18.
• Sex ratio of respondents is 49
F: 12 M.
• 87% want to meet another
teen with their illness or a
similar rheumatic disease.
• 62% are willing to meet in
person, 79% by email, 82% via
IM (instant messaging), and
57% in a chat room.
age
sex
diagnosis
range
13-18 years
Mean.SD
15.0, 0.2 years
F
48
M
13
SLE
15
JRA
14
SPONDY
7
SCL/MCTD
6
APL
4
VASC
3
DERM
2
OTHER
10
Results Aim 1, secondary
Yes
Willingness to participate in an online chat room support
group
Willingness to participate in a face-to face support group
Total
50 (82%)
11 (18%)
Girls
41 (85%)
7 (15%)
Boys
9 (69%)
4 (31%)
Total
38 (62%)
23 (38%)
Girls
34 (70%)
14 (30%)
Boys
4 (31%)
9 (69%)
Yes
Time to participate in an online chat room support group
Time to participate in a face-to-face support group
No
Maybe
No
Total
39 (64%)
16 (26%)
6 (10%)
Girls
32 (67%)
11 (23%)
5 (10%)
Boys
7 (54%)
5 (38%)
1 (8%)
Total
13 (21%)
32 (52%)
16 (17%)
Girls
9 (19%)
28 (58%)
11 (23%)
Boys
4 (31%
4 (31%)
5 (38%)
Results Aim 1, secondary
• 62% of the teen patients answered that they would be
willing to participate in a face-to-face support group,
where as 82% were willing to join a Stanford-sponsored,
adult supervised chat room support group.
• Only 21% said they would definitely have time for a faceto-face support group and 52% thought they may have
time for this intervention.
• In contrast, 64% would definitely have time for an online
chat room support group with an additional 26% who
believe they may have time for this group.
• All patient concurred that they would like to know more
about their illness.
Statements evaluating opinions regarding computer
use, social support systems, and online interactive
modalities
Agree with
statement
Disagree
with
statement
I like and am fine about using computers
98%
2%
I use computers for homework
89%
11%
I would like to meet new friends
95%
5%
I am comfortable about meeting new people
93%
7%
I want to meet other with similar health problems
87%
13%
My family understands when I do not feel well
26%
74%
My friends understand when I do not feel well
38%
62%
I like using email
85%
15%
I like instant messaging
85%
15%
I like going to chat rooms
46%
54%
I wish I knew someone who understood what I am going
through
77%
23%
I want to learn more about my illness
93%
7%
Results Aim1 pt2
• Univariate analysis of significant variables predictive chat room
participation revealed that time for chat room participation, use of
computers for homework, desire to meet a teen with similar health
issues, wanting to meet someone going through the same
experience, liking email, IM, and chat rooms, as well as parents not
watching their online activities.
• When all of these variables were put together to perform a stepwise
backward regression, no combination was more predictive than time
to participate alone.
• In modeling predictive variables for face-to-face support group
participation, none of the above variables were significant except
wanting to meet someone going through similar experiences, and
instead sex and time for a face-to-face group were predictive.
Results aim 2
• 50 patients were sent
initial Aim 2
questionnaires including
the CHAQ, CHQ, and
adolescent transition
survey.
• 40 responded to the prechat room surveys, but
only 28 provided complete
responses to maintain
eligibility for the chat room
Results aim 2
• Chat room was open from February 2004 to
June 2004, on a twice weekly basis for 3 hour
sessions
• Security was intact throughout with no outside
lurkers or intruders entering
• Initially, log-in and entry were difficult resulting
in some loss of continued participation
• Typically, 2-5 chatters were present at each
session
• 19 patients entered the chat room at least
once during the 4 month period: 18 were
female and over half had SLE or JRA
Results Aim 2
• Initial perusal of outcome measures show no
difference between pre- and post- chat
intervention for participants and no apparent
diffferences in these measures between
participants and non-participants.
– Unfortunately, timely return of measures was poor
(average span of 10 months)
– Also, many patients had confounding issues including
treatment changes and disease flares likely
contributing more to changes
– Some questionnaires also were not accurately
completed, especially by younger teens
Results Aim 2
• All participants had positive feelings and were generally
satisfied with the chat room, especially in providing
contact with other teens with similar problems
• An organized format was considered a better format for
the chat room providing a platform for discussion
especially on transition-related topics
• Suggestions for improvement included increasing chat
room hours, separating ages out more, increasing
participation, and having profiles for each participant
• Qualitative analysis of chat interactions still are being
done.
Discussion and significance
• We were able to confirm
the teen interest in using
the internet in patient care,
specifically in creating and
running a chat room
support group for our teen
rheumatic population.
• Patients who think they
have time for this
intervention are the most
likely to participate
Discussion and significance
• The chat room was feasible in its
execution, but really did not get the
number of participant we had expected
• For those who did participate
• Also, we need to find easier and faster
methods to administer our outcome
measurements. Ideally, use of online
shorter versions of the questionnaires can
facilitate this.
Discussion and significance
• Ultimately, we would like to
perform a large scale multicenter study evaluating the
potential effect in may have
on teen rheumatic patient
quality of life, physical
functioning, and transitional
issues.
Discussion and significance
• We are hopeful that more research will
continue in this field based on our study
findings and it will have a further role in the
transition process for teens to adult
providers.
Acknowledgments
• Thanks to Christy Sandborg MD, Kate
Lorig RN, DrPH, and the rest of the
Stanford Pediatric Rheumatology Team for
their support and guidance.
• Thanks for Mary Goldstein MD of HSR for
further guidance
• More thanks also goes to the Arthritis
Foundation and American College of
Rheumatology for funding this project!