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Internet-based education tool improved self-management, QoL in teens with JIA
SAN DIEGO — An internet-based education and management program, paired with monthly health coaching, significantly improved health-related quality of life and disease management skills among teenagers with juvenile idiopathic arthritis, according to findings presented at the American College of Rheumatology Annual Meeting.
“As children with JIA move into adolescence, it is important to help them develop self-management skills so they can have the appropriate skills when they move into adult care,” Jennifer Stinson, RN-EC, PhD, CPNP, from Child Health Evaluative Services at The Hospital for Sick Children in Toronto, said during a press conference. “However, at least in Canada, studies have shown that 50% of young people do not successfully transition to an adult rheumatology provider.”
“Many young people do not receive this care due to access issues,” she added. “Several of the children we see are from remote areas and children do not want to come in for group-based sessions, and if they can’t get these sessions locally, they often have to pay out of pocket.”
To address these barriers, researchers in Canada developed the Teens Taking Charge Managing JIA Online program to provide disease education, self-management strategies and social support through an easily accessible website for teenagers with JIA to review in their own time.
“This program was built because young people are ‘digital natives’ – they are glued to their smartphones, and use the internet continually to seek out health-related information,” Stinson said.
To determine the efficacy of this intervention, the researchers enrolled 333 teenagers aged 12 to 18 years with JIA from 11 pediatric centers in Canada to into either an intervention group — in which patients reviewed 12 modules on disease education and self-management strategies — or the control group which reviewed standard publicly available disease education modules, excluding the self-management materials.
Although both groups were assigned health coaches to maintain “check-ins” during the 3-month period, the coaches only reviewed the education and management modules with the intervention group.
According to study results, compared with the control group, the intervention group experienced a significant overall reduction in pain interference with aspects of their quality of life. In addition, patients in the intervention group noted improvements in health-related quality of life related to treatments they were receiving.
“Interestingly, both groups, simply by providing information in and of itself — and perhaps, additionally by checking in with them — had nonsignificant improvements in their knowledge and pain coping self-efficacy, and other aspects of health-related quality of life,” Stinson said.
Upon follow-up, most of the patients reported that the monthly “check-ins” from the health coaches were helpful and patients were satisfied with the frequency of the calls. Most patients also noted that the website was helpful, including its text content, videos, graphics and animation, as well as its relaxation exercises.
“The website is now freely available so essentially all of the rheumatology clinics in Canada are prescribing this website to patients when they are diagnosed with arthritis to ensure that they have credible information to help them manage their disease,” Stinson said. “In terms of next steps, at SickKids we have created a mentoring program called iPeer2Peer in which patients who have successfully transitioned to adult care are matched with teenagers with arthritis using Skype. When paired with the online program, we think this may actually be more effective because the mentors will be able to help tailor the self-management program to match the teens’ needs.”-by Bob Stott
Reference:
Stinson JN, et al. Abstract 2952. Presented at: American College of Rheumatology Annual Meeting; Nov. 4-8, 2017; San Diego.
Disclosures: Stinson reports no relevant financial disclosures. Please see the full study for a complete list of all other authors’ relevant financial disclosures.