Background/Purpose: The current JIA Core Set (ACR Pediatric 30) contains items that should be assessed in clinical trials for children with JIA. It was developed in 1997 without subsequent update. A shortcoming of the existing Core Set is the lack of patient/caregiver input in its development. The OMERACT JIA Core Set Group formed in 2015 as an international initiative to revise the existing Core Set with relevant patient/caregiver input. The aim of the current study, as part of the larger initiative, was to conduct focus groups to: 1) develop a comprehensive list of potential patient/caregiver outcome domains, 2) define the concept(s) represented by each domain, and 3) begin to prioritize these domains.

Methods: Patient and caregivers from North America participated in virtual focus groups (VFGs) about their experiences related to JIA. The VFGs utilized online discussion boards instead of in-person focus groups in order to accommodate more participants from diverse geographic regions, facilitate unrestricted sharing, and be efficient and cost-effective. Two sets of VFGs were performed: 1) caregivers and 2) adolescents and young adults with JIA. Eligibility was based on self-reported diagnosis of JIA and prior or current experience of JIA disease inactivity (>3 months). A qualitative researcher conducted the VFGs, which consisted of a 3-day online discussion board per group. Discussion guides sought to elucidate the impact of JIA on physical, mental and social health, and the perceived differences between active and inactive JIA. Participants answered questions individually and then could comment on others’ responses. Transcripts were coded into domains with respect to OMERACT Core Areas and analyzed using NVivo 10.

Results: The caregiver VFG was split based on the age of their children: <15 years (n=10), and >15 years (n=10). The patient VFG was split into ages 15-17 (n=11), and 18-24 (n=13). Each group was diverse with respect to geography and categories of JIA, and included patients with active and inactive disease at the time of study. Participants discussed their experiences with JIA, life impact, resource use, pathophysiological manifestations, and adverse effects of JIA and its treatment. Data analysis revealed unique domains not represented in the current Core Set. Patients identified various psychosocial impacts of JIA and how it impacted participation in activities with their peers, school and/or job. Caregivers of younger children expressed fear for the future and unknown manifestations of JIA. Caregivers of older children identified the impact JIA had on the family and their child’s participation in activities. Patients and caregivers characterized disease inactivity as the absence of pain, stiffness and swelling, increased activity participation, and improved mood and sleep quality.

Conclusion: The VFG format helped elicit concepts important to distinct and diverse groups of stakeholders affected by JIA. The current JIA Core Set lacks the patient/caregiver-centered domains identified in this study. Future efforts will perform VFGs in other geographic areas (Europe, Australia) and develop a model of the patient/caregiver experience of JIA that will inform the ongoing effort to expand the JIA Core Set.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/reconsidering-the-juvenile-idiopathic-arthritis-core-set-how-patients-and-caregivers-define-disease-activity/