SAN DIEGO — Findings from a study presented at the American College of Rheumatology 2017 Annual Meeting reported that teens with juvenile idiopathic arthritis (JIA) and their parents enjoyed participating in an internet-based intervention designed to improve accessibility and disease self-management, and that the program improved aspects of their health-related quality of life (HRQoL).
“As children move into the adolescent period, it is really important to help them develop self-management skills so they can have the skills they need to manage their condition as they move into adult care,” said Jennifer N. Stinson, RN, PhD, from the Hospital for Sick Children in Toronto. “At least in Canada, studies have shown that about 50% of young people don’t successfully transition to an adult rheumatology provider.”
“There is also evidence to show that by providing people with psychoeducational treatments to manage their condition, it can help with this transition. But a lot of young people don’t receive this type of care because of access issues; a lot of kids that we see are from rural or remote areas. Kids don’t want to come in for group face sessions that often work with adults — and if they can’t get these sessions, then they have to pay out of pocket.”
The researchers developed the “Teens Take Charge Engine Arthritis Online Program,” an internet-based intervention designed to provide disease education, self-management strategies, and social support to teens with JIA. A randomized controlled trial was conducted to assess the effectiveness of the program.
“We did a needs assessment with young people, their parents, and healthcare providers, and the young people really wanted to know about their arthritis,” Dr Stinson said. “They wanted to know about how to manage physical and emotional symptoms, [and] they wanted skills on how to communicate with others, [including] healthcare providers, teachers, and [how] to advocate for themselves.”
A total of 333 teens from 11 pediatric centers in Canada between 12 and 18 years of age (n=109 male, n=224 female; mean age=14.5, SD=1.7) and 306 parents (n=52 male, n=254 female) were enrolled in the study. Participants in the intervention arm reviewed 12 modules focused on disease education and self-management strategies. Participants in the control group reviewed standard disease education modules that did not include self-management information. During the course of the 3-month program, health coaches conducted monthly check-ins with both groups of teens but only reviewed modules with the intervention group. Parents in both groups reviewed modules about encouraging their teen to have independence and self-manage their disease.
Teens and parents completed outcome measures at baseline, program completion, 3-month follow-up, and 6-month follow-up. Primary outcomes were pain and HRQoL. Secondary outcomes were emotional symptoms, adherence, coping, knowledge, and self-efficacy.
Of the 164 intervention participants, 62.8% (n=103) completed the study over an average of 189.8 days (SD=113.5). Of the 169 control participants, 87.0% (n=147) completed the study over 123.6 days (SD=70.6).
The researchers’ analyses showed that the participants in the intervention group had a significant overall reduction in pain interfering with their enjoyment of daily life compared with the control group after adjusting for baseline level of interference (intervention: M=1.03, SE=0.16; control: M=1.62, SE=0.13; P =.004).
In the intervention group, there was also a statistically significant interaction between time and improvement of HRQoL. The intervention group reported improved HRQoL vs control participants by 12 months (mean difference at 12 months=3.22, SE=1.56, adjusted P =.040).
Participants in both groups also showed nonsignificant improvements over time compared with baseline in pain coping, self-efficacy, disease knowledge, and HRQoL. The majority of teens in the intervention group found the calls from health coaches helpful and were satisfied with call frequency. Most teens also found website text content, videos, graphics/animations, and relaxation exercises helpful.
Dr Stinson noted that some of the intervention participants dropped out because there was information in the modules and in the health coach check-ins that they felt they did not need to know. The website the researchers created is now freely available online at teens.aboutkidshealth.ca/jia, but they are conducting follow-up studies replacing the health coaches with mentors who had JIA as teens and who have transitioned to adult care. They hypothesize that this will produce better results, as the mentors can tailor their assistance to meet the needs of the participants.
Stinson JN, Campillo S, Cellucci T, et al. A randomized controlled trial (RCT) of an internet-based self-management program for adolescents with juvenile idiopathic arthritis (JIA). Presented at: ACR/ARHP 2017 Annual Meeting; November 3-8, 2017; San Diego, CA. Abstract 2952.
This article originally appeared on Rheumatology Advisor