Online Support Tools Teach Self-Management for Teens With Juvenile Arthritis
At the Annual Meeting of the American College of Rheumatology in Washington, DC, several experts presented their progress in harnessing technology to help teenagers and young adults manage their juvenile arthritis. The 3 interventions—a mobile app, a Web-based intervention, and a video chat session—all focused on providing young patients with disease information, coping strategies, and social support.
The first speaker, Jennifer Stinson, RN, PhD, CPNP, presented iCanCope, a pain-management mobile app for young people with juvenile idiopathic arthritis (JIA). She explained that her work in Child Health Evaluative Sciences at the Hospital for Sick Children in Toronto, Canada, led her to realize that these young patients were an ideal target audience for a mobile app. Pain is the most common and distressing symptom of JIA, but most patients do not receive adequate pain education or self-management skills training.
Stinson described iCanCope as a comprehensive pain self-management app designed to help 12 to 18 year olds better understand their condition, develop healthy pain coping strategies, and receive social support from their peer group. Some key features include a symptom tracker, a goal-setting function that tracks progress and sends reminders, and a coping skills toolbox.
When developing the app, the researchers heard from patients that they wanted a friendly and safe space where they could feel supported by peers. “Young people told us this was really important to them, but they didn’t really want another Facebook group to manage,” Stinson said. In response to this request, the app now features a social area where community members can share coping strategies in response to each day’s specific question.
The next speaker, Mark Connelly, PhD, professor of pediatrics at Children’s Mercy Hospital in Kansas City, Missouri, cited Stinson’s research as foundational to his project, Teens Taking Charge. Launched in 2008, this website provides a 12-week cognitive-behavioral intervention for JIA patients. Like Stinson’s app, it incorporates social support, disease information, and pain management strategies in hopes of improving the quality of life for these teenagers.
“Advances in medical management of JIA don’t necessarily correlate with advances in improving outcomes important to kids,” Connelly said. The website’s creators used technology to affect these outcomes by disseminating information and building a community of social support, which would hopefully change the users’ perception of their disease.
The Teens Taking Charge website includes features like educational animations, a goal journal, a social forum, and cognitive-behavioral coping skills training. Connelly identified the use of positive patient stories videos featuring other teens with JIA as an important part of building social support for these patients.
“I think probably the most powerful thing for these kids is feeling [like] a part of a community, and that really changes patient-reported outcomes,” he said. That community identification, along with increased self-efficacy and disease education, could be key determinants of improving the most important outcomes for these young patients.
The importance of social support was emphasized by the final speaker, Lynn Spiegel, MD, FRCPC, of the Hospital for Sick Children in Toronto. Her project, iPeer2Peer, was an online peer support intervention in which teens aged 12 to 18 were matched with trained mentors aged 17 to 25 who also had JIA. Each pairing had 10 Skype conversations over an 8-week period.
The program is an “opportunity to connect a teen to an older peer with the same chronic illness who is successfully managing their condition,” Spiegel said. “The mentor is able to help the teen target social and physical aspects of their condition, and they can also help them navigate transition issues.” This support could influence health outcomes by addressing feelings of isolation and promoting a positive outlook.
All participants reported that they would recommend the program to a friend, and reported significant improvements in their perceived ability to self-manage JIA, access to social support, and disease knowledge. The median engagement level was high at 8.5 out of 10. The program administrators also received “excellent” feedback from both mentees and mentors who said they gained social support and friendships from the intervention.
Spiegel suggested that peer role models can reduce the stigma of chronic disease by normalizing the teen’s experiences and acting as symbols of hope. Young people also may feel more comfortable getting practical advice and understandable information from a peer as opposed to a parent or healthcare professional.