An internet-based self-management program for adolescents with juvenile idiopathic arthritis (JIA): A randomized controlled trial (RCT)

Introduction: Juvenile Idiopathic Arthritis (JIA) is a common chronic childhood illness that can negatively impact health‐related quality of life (HRQL). Adolescents are expected to assume greater responsibility in disease management as they mature. However, the vast majority of adolescents with JIA do not receive comprehensive self‐management education. Internet‐based interventions provide an innovative approach to improve the accessibility and acceptability of self‐management programs for adolescents with chronic illnesses. Objectives: A randomized control trial was conducted to determine the effectiveness of an Internet‐based self‐management intervention. We hypothesized that youth with JIA in the Internet self‐management intervention (Teens Taking Charge or TTC) group will demonstrate: (a) reduced pain and improved HRQL (primary outcomes); (b) reduced emotional (anxiety and depression) symptoms; and (c) Increased treatment adherence, pain coping, JIA‐specific knowledge, and self‐efficacy compared to adolescents in the control group (static web‐based education). Methods: Participants were between 12‐18 years old with JIA across 11 pediatric centers in Canada. Teens participated with a parent/caregiver. Teens in the intervention reviewed 12 modules focused on disease education, self‐management strategies and social support. Teens in the control condition reviewed standard disease education modules without self‐management skills or social support. As part of the 3‐month program, teens had monthly telephone check‐ins with health coaches, but only intervention participants reviewed modules with their coach. Parents in both groups reviewed modules focused on promoting independence and disease self‐management in their teen. Teens and parents completed outcome measures at 4 time points: baseline, at program completion (3‐months), 6‐months, and 12‐months after the program. Results: In total, 333 teens (n = 109 male, n = 224 female; mean age = 14.5, SD = 1.7) and 306 parents (n = 52 male, n = 254 female) were enrolled. of the 164 participants in the intervention group, 62.8% (n = 103) completed the study over an average 189.8 days (SD = 113.5). of the 169 control participants, 87.0% (n = 147) completed the study over an average 123.6 days (SD = 70.6). Results indicated that average weekly pain interference in enjoying daily life (p = 0.004) and PedsQL treatment problems (p = 0.010) improved significantly in the intervention group as compared to the control group. Improvements in self‐efficacy, disease knowledge, health related quality of life and pain coping were shown at 3‐month follow‐up, when compared to baseline for both intervention and control groups. There were no changes in either group for anxiety, depression or adherence. Conclusion: Teens with JIA overall are satisfied with using an online program for education and learning self‐management skills, with im‐provement in pain interference and HRQOL deriving in part from in‐creased knowledge and self‐efficacy. Education and nonspecific factors (e.g., feeling part of a community) may be key determinants of improving important patient reported outcomes through the on‐line self‐management program.