Defining patient perception of overall well-being and disease activity in the OMERACT Juvenile Idiopathic Arthritis (JIA) core domain set: A report from the JIA working group.

Objective: The OMERACT Juvenile Idiopathic Arthritis (JIA) Working Group (WG) aimed to reach agreement on a consensus-based definition and description of the core domain related to patient perception of overall well-being and disease activity.
Methods: A committee of patient research partners, clinicians, methodologists, and researchers drafted working definitions and descriptions. The WG conducted two iterative electronic stakeholder surveys to obtain consensus on domain description, definition, and the distinction between patient perception of overall well-being and disease activity. These definitions were then presented at the OMERACT 2023 Special Interest Group (SIG) session for agreement.
Results: Forty-five participants, from 7 countries and 4 continents, were comprised of six patients, 18 caregivers, and 21 healthcare providers. The consensus threshold (70%) was exceeded on all survey questions from both stakeholder groups (patients/caregivers, all others). Agreement was obtained on the new definition, description, and domain title, along with agreement on separate assessments of two target domains, patient perception of overall well-being as it relates to disease and patient perception of disease activity.
Conclusion: Through an iterative consensus process and achieving agreement from the OMERACT SIG session attendees, the JIA WG has created a detailed definition and description for the two target domains in the patient perception of overall well-being related to disease core domain of the JIA mandatory core domain set. The next phase of this work will be instrument selection using the OMERACT filter 2.2.
Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Erin Balay-Dustrude reports travel was provided by Omeract - Outcome Measures in Rheumatology. Ben Horgan reports travel was provided by Omeract - Outcome Measures in Rheumatology. Grayson Shultz reports travel was provided by Omeract - Outcome Measures in Rheumatology. Alessandro Consolaro reports a relationship with Pfizer that includes: funding grants and speaking and lecture fees. Joost F. Swart reports a relationship with Amgen Inc that includes: consulting or advisory. Esi M Morgan reports a relationship with Pfizer that includes: funding grants. Esi M Morgan reports a relationship with Agency for Healthcare Research and Quality that includes: funding grants. Esi M Morgan reports a relationship with American College of Rheumatology that includes: speaking and lecture fees and travel reimbursement. Esi M Morgan reports a relationship with Pediatric Rheumatology Care and Outcomes Improvement Network that includes: board membership.
(Copyright © 2023. Published by Elsevier Inc.)