JMIR Publications

ABSTRACT

Background:

Needs assessments in patients with juvenile idiopathic arthritis (JIA) have revealed a need for disease information, self-management skills, and peer support. We previously developed and tested the acceptability of an in-person and videoconference self-management program (SMP) to address these needs.

Objective:

The aim of this pilot randomized controlled trial (RCT) is to evaluate the feasibility and preliminary effectiveness of a virtual group based SMP in adolescents with JIA compared to wait-list control group.

Methods:

A total of 100 participants with confirmed JIA (ages 12 to 17) will be recruited from five Canadian pediatric rheumatology centres and randomized in a 1:1 ratio to the intervention or waitlist control groups. Adolescents in the intervention group will receive the virtual SMP program. Those randomized to control will receive standard of care alone and will later be eligible for the SMP. The SMP includes JIA disease education, self-management strategies, and peer support. Four 60–90-minute sessions will be conducted over eight weeks with a group size of 4-6 participants. The primary feasibility outcome will be adherence to the SMP Program (defined as completion of all four sessions by at least 80% of participants). Other secondary feasibility outcomes will include (A) recruitment and withdrawal rates (B) proportion of completed questionnaires (C) engagement and satisfaction with the SMP program measured through a semi-structured virtual interview and (D) intervention fidelity (consistent content and technology delivery). Secondary preliminary effectiveness outcomes will be assessed by completing five validated questionnaires at pre and post program time points: (A) the Medical Issues, Exercise, Pain, and Social Support Questionnaire (MEPS) to assess perceived ability to manage JIA (self-management), (B) Children’s Arthritis Self-Efficacy Scale (CASES) to assess self-efficacy, (C) Pediatric Quality of Life Inventory 3.0 Rheumatology - Teen Module (Peds QL) to assess health-related quality of life (HRQL), (D) PROMIS Pediatric Pain Interference Scale (PROMIS) to assess pain interference and (E) Readiness for Adult Care in Rheumatology (RACER) to assess transition readiness. Descriptive statistics and non-parametric tests will be used to analyze the data.

Results:

N/A

Conclusions:

This is the first evidence-based virtual interactive group-structured JIA SMP in Canada. This SMP will address needs for disease information, self-management skills, and peer support in adolescents with JIA. Results of this pilot study will inform a full scale RCT focused on the efficacy and cost effectiveness of the program with the goal of integration in routine clinical practice across Canada. Clinical Trial: ClinicalTrials.gov (NCT06184100)