Internet Use In Teens with Chronic Illness

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Internet Use In Teens with Chronic Illness

• Peter Chira, MD
• Clinical Instructor, Pediatric Rheumatology
• Masters Candidate in Health Services Research
  Program
• November 30, 2005

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Project Overview

• This pilot project will determine the
  feasibility of using an online peer chat group as
  a means of increasing support, knowledge, and
  well-being for teens with chronic illness,
  specifically with rheumatic diseases. We hope to
  accomplish two major aims.

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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.

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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.

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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.

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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.

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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
  help-seeking resource for emotional problems.

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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.

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Background

• Few studies have focused on the Internets
  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.

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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.

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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.

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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 parent-focused,
  and there is no information about benefits for
  patients themselves.

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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.

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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.

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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 Childrens 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.

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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 cross-sectional 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.

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Variables- aim 1, primary study
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Variables- aim 1, secondary study
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Statistical methods Aim 1
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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.

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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
  self-efficacy and well-being.

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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

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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.

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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

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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.

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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.

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Methods Aim 2

• Intervention and Structure
• Chat 1 was to have an unstructured format to
  their online chat room with passive adult
  supervision.
• Chat 2 was serve as controls for Chat 1 while
  they are waiting for their group to start
  during Chat 1s session.
• Prior to Chat 2 beginning their session, we were
  going to format the structured program for Chat 2
  during a 8-week hiatus, using the experience and
  suggestions from Chat 1.
• For Chat 2, the adult supervisor was act as chat
  room manager and a weekly topic will be presented
  informally, addressing items found in the
  adolescent transition assessment tool, but there
  is no obligation to maintain the entire session
  devoted to it.
• At the end of any chat groups 3-month session,
  participants and parents will fill out an
  additional exit questionnaire assessing their
  respective attitudes towards the intervention,
  satisfaction with the program, and other issues.

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Methods Aim 2 original design
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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.

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Methods Aim 2 redesign
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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.

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Methods Aim 2
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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

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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.

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Results Aim 1
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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.

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Results Aim 1
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Results Aim 1
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Results Aim 1
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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

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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 childs illness.
• Almost all patients ( 88) and parents (95)
  wanted a website where they could obtain more
  information about childhood rheumatic disease.

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Results Aim 1
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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.

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Results Aim 1, secondary
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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 face-to-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.

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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.

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Results aim 2

• 50 patients were sent initial Aim 2
  questionnaires including the CHAQ, CHQ, and
  adolescent transition survey.
• 40 responded to the pre-chat room surveys, but
  only 28 provided complete responses to maintain
  eligibility for the chat room

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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

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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

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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.

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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

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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.

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Discussion and significance

• Ultimately, we would like to perform a large
  scale multi-center study evaluating the potential
  effect in may have on teen rheumatic patient
  quality of life, physical functioning, and
  transitional issues.

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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.

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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!