Teens Taking Charge: A Randomized Controlled Trial of a Web-Based Self-Management Program With Telephone Support for Adolescents With Juvenile Idiopathic Arthritis (Preprint)
Authors: Stinson Jennifer N , Lalloo Chitra , Hundert Amos S , Campillo Sarah , Cellucci Tania , Dancey Paul , Duffy Ciaran , Ellsworth Janet , Feldman Brian M , Huber Adam M , Johnson Nicole , Jong Geert't , Oen Kiem , Rosenberg Alan M , Shiff Natalie J , Spiegel Lynn , Tse Shirley M L , Tucker Lori , Victor Joseph Charles 
Published: September 2019

BACKGROUND

Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes.

OBJECTIVE

This study aimed to evaluate the effectiveness of the <i>Teens Taking Charge</i> 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 to 18 years were recruited from 11 Canadian pediatric rheumatology centers. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either (1) the <i>Teens Taking Charge</i> self-management intervention or (2) a Web-based education control condition for a period of 12 weeks. Adolescents in the intervention group completed website modules addressing cognitive behavioral 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 preselected public JIA educational websites and received monthly calls from a coach who asked about <i>their own best efforts</i> at managing JIA. Caregivers in the intervention group completed 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 preselected public JIA educational websites. Outcome assessment occurred at baseline, 12 weeks (posttreatment), and at 6 and 12 months postrandomization. The primary outcomes were pain intensity, pain interference, and HRQL. 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 (<i>P</i>=.02) and pain interference (<i>P</i>=.007) were observed for intervention group participants compared with those in the education control group, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (<i>P</i>=.02) and problems with daily activities (<i>P</i>=.01). There was also a significant difference in the intervention group over time (<i>P</i>=.008) for HRQL related to treatment problems, with the intervention group participants demonstrating improved HRQL by 12 months compared with education control group participants. Both groups showed nonsignificant improvements compared with baseline in other primary outcomes. There were no significant differences between the groups in any secondary outcomes or caregiver-reported outcomes.

CONCLUSIONS

The results of this randomized trial suggest that the <i>Teens Taking Charge</i> Web-based intervention is effective at reducing both pain intensity and pain interference, as well as improving HRQL in adolescents with JIA, compared with education control. These effects are sustained for up to 12 months following program completion. The <i>Teens Taking Charge</i> program is now publicly available at no cost.

CLINICALTRIAL

ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896