Our group, as part of a national multicenter initiative, has developed an interactive Internet-based program, called Teens Taking Charge: Managing Arthritis Online (TTC, see image on opposite page). It’s designed for youth with JIA and their parents. Available in English, French and Spanish, it has multiple components, including JIA-specific education, self-management and coping strategies, social support and a parent site. This dynamic program keeps teens engaged with quizzes, interactive questions and goal-setting exercises. A pilot study supported the feasibility and initial efficacy of TTC for improving disease-specific knowledge and reducing pain in youth with JIA.26 Final evaluation for the effectiveness of this intervention is reaching completion, and the site should be freely available within the year.
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Explore This IssueMay 2015
Our center has also developed an online peer support intervention for youth with JIA, called Virtual Peer-to-Peer Mentoring (VP2P). We developed a support manual, provided training for mentors (i.e., young adults with JIA) and are completing a pilot study in which trained mentors connect with JIA teens using Skype. Preliminary results suggest the VP2P intervention is a promising psychosocial program with the potential to improve self-efficacy, self-management, disease knowledge and social support.
Adult HCPs … are often frustrated with youth who don’t take responsibility for their health, parents who are overbearing & overly involved, & medical records that are inadequate or nonexistent.
Measuring Transition Readiness
Although it’s important to assess the effectiveness of existing interventional programs, no validated tools exist to measure transition readiness in youth.27 As part of a national multicenter collaborative effort, our group developed the RACER questionnaire (Readiness for Adult CarE in Rheumatology) to measure transition readiness. The RACER questionnaire was designed to assess gaps in youths’ knowledge and emotional preparedness, identify areas in which they need additional education and support and assess the efficacy of transition interventions.28 We have completed testing of the RACER questionnaire for face and content validity, and will be testing construct validity and reliability.
It’s important to recognize that transfer to adult care often occurs at a time when youth don’t have the skills, emotional development or maturity to successfully make the move from the pediatric to the adult healthcare system. Poor transition can lead to adverse outcomes in long-term health management. Transition support and education will help. We are hopeful that ongoing research will lead to the development of innovative programs and tools to help ensure a successful transition.