JMIR Publications

ABSTRACT

Background:

Juvenile Idiopathic Arthritis (JIA) is a serious and potentially debilitating paediatric illness. Improved disease self-management may help to improve health outcomes.

Objective:

To evaluate the effectiveness of the “Teens Taking Charge" web-based self-management intervention in reducing symptoms and improving health-related quality of life (HRQL) in adolescents with JIA, compared with a web-based education control condition.

Methods:

Adolescents with JIA aged 12-18 years were recruited from 11 Canadian paediatric rheumatology centres. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either: (1) the “Teens Taking Charge” self-management intervention or (2) a web-based education control condition for a period of 12-weeks. Adolescents in the intervention group worked through website modules addressing cognitive-behavioural coping skills, stress management, and other self-management topics, while also receiving monthly telephone calls from a trained health coach. Adolescents in the education control group were instructed to view a series of pre-selected public JIA educational websites, and received monthly calls from a coach who asked about "their own best efforts" at managing JIA. Caregivers in the intervention group worked through website modules related to promoting independence and disease self-management in their child. Caregivers in the education control group were instructed to view a series of pre-selected public JIA educational websites. Outcome assessment occurred at baseline, 12-weeks (post-treatment), and at 6- and 12-months post-randomization. The primary outcomes were: pain intensity, pain interference, and health-related quality of life. Secondary outcomes were: emotional symptoms, adherence, coping, knowledge, and self-efficacy.

Results:

In total, 333 adolescents and 306 caregivers were enrolled. Significant overall reductions in pain intensity (p=0.020) and pain interference (p=0.007) were observed for intervention participants compared to education control, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (p=0.021) and problems with daily activities (p=0.012). There was also a significant difference between intervention group over time (p=0.008) for HRQL related to treatment problems, with the intervention group demonstrating improved HRQL compared with education control participants by 12 months. Both groups showed non-significant improvements compared to baseline in other primary outcomes. There were no significant differences between groups on any secondary outcomes, or caregiver-reported outcomes.

Conclusions:

The results of this randomized trial suggest that the "Teens Taking Charge" online intervention is effective at reducing both pain intensity and pain interference, as well as, improving HRQL in adolescents with JIA, compared to education control. These effects are sustained for up to 12 months following program completion. The "Teens Taking Charge" program is now publicly available at no cost: https://teens.aboutkidshealth.ca/jiateenhub Clinical Trial: Clinicaltrials.gov identifier: NCT01572896