Ross Hetherington*, The Hospital for Sick Children, University of Toronto, Toronto, Canada Jennifer Stinson, The Hospital for Sick Children, University of Toronto, Toronto, Canada James Wright, The Hospital for Sick Children, University of Toronto, Toronto, Canada Vicky Breakey, The Hospital for Sick Children, University of Toronto, Toronto, Canada Cathy Schmidt, The Hospital for Sick Children, Toronto, Canada Sandra Donaldson, The Hospital for Sick Children, Toronto, Canada Victor Blanchette, The Hospital for Sick Children, University of Toronto, Toronto, Canada Track: Practice Presentation Topic: Health information on the web: Supply and Demand Presentation Type: Oral presentation Submission Type: Single Presentation Building: LKSC Conference Center Stanford Room: Lower Auditorium 130 Date: 2011-09-17 04:30 PM – 06:00 PM Last modified: 2011-08-15

If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL).

AboutKidsHealth is a 20-member consumer health informatics team that is the patient education group at The Hospital for Sick Children in Toronto, Canada. Our major project is the child health consumer information site www.AboutKidsHealth.ca. It has been estimated that up to 30% of teenagers have some form of chronic condition. These youth face issues including medication compliance and other disease management protocols; a range of psychosocial issues including autonomy, peer relations, body image, sexuality, risky behaviors, and transition to adult care. With clinician/researchers at the hospital and from other pediatric hospitals across Canada, we have developed a number of internet-based, patient education interventions targeting teenagers with chronic disease or teens contemplating major surgery with the goal of ameliorating some of the issues these teenagers face by providing accessible, interactive disease information, and self-management or decision-making instructions and tools. Information for parents is provided as well. A core goal of these projects is to develop effective, interactive educational materials that once validated by research, will be published on the AboutKidsHealth.ca website. Here we report on three such projects in our Teens Taking Charge series. All three have been developed or are under development as multi-center research studies. The focus of this report is on the overall approach, and the design, architecture, multimedia elements, and interactive features of the programs used to engage, support, and educate youth. Innovative features to engage teens include the use of multiple videos of teens discussing their experiences, professionals interacting with teens, and professionals. Another example is the use of click-through or interactive medical animations to illustrate procedures such as joint injections or changes in curvature post-scoliosis surgery. The first project was a multi-center pilot randomized controlled trial examining the efficacy of an internet-based disease self-management educational program with telephone support for teenagers with juvenile idiopathic arthritis. The site was well received in usability testing. Teens and parents felt the materials were acceptable. Many participants stated the discussion fora and videos made them feel “less alone." Disease knowledge was higher and weekly pain lower in the group receiving the intervention during the pilot study. The second study, still underway, is a two-center study evaluating a program providing education, social support, and medical decision-making support for teenagers and their families contemplating scoliosis surgery. Focus groups conducted with adolescents supported a need for this type of resource, and brought out, among other themes, the importance of including information about recovery at home and in the hospital; post-surgical appearance; emotional impact of surgery and coping; and the impact of surgery on school, peer relations, and social activities. The third project, currently under development, is a disease-specific education and self-management program for teenagers with hemophilia. Examples of how the design challenges of creating a resource for teenage boys will be provided. Approaches to development of these internet-based programs will be discussed, along with issues faced in development. Some highlights of focus group findings, usability testing, and pilot study results will also be presented.