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

Erin Balay-Dustrude; Robin Christensen; Alessandro Consolaro; Y Ingrid Goh; Beth S Gottlieb; Benjamin Horgan; Jennifer Horonjeff; Lara J Maxwell; Jane Munro; Nancy Pan; Grayson Schultz; Joost F Swart; Karine Toupin-April; Esi M Morgan

doi:10.1016/j.semarthrit.2023.152340

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

Semin Arthritis Rheum. 2024 Feb:64:152340. doi: 10.1016/j.semarthrit.2023.152340. Epub 2023 Nov 30.

Authors

Affiliations

¹ Department of Pediatrics, University of Washington, Seattle, WA, USA; Seattle Children's Hospital, Seattle, Washington, USA. Electronic address: [email protected].
² Section for Biostatistics and Evidence-Based Research, the Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark; Research Unit of Rheumatology, Department of Clinical Research, University of Southern Denmark, Odense University Hospital, Denmark.
³ Istituto Giannina Gaslini, Genova, Italy; Università degli Studi di Genova, Genova, Italy.
⁴ Division of Rheumatology, The Hospital for Sick Children, Canada; Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada.
⁵ Pediatric Rheumatology, Cohen Children's Medical Center, Northwell Health, Zucker School of Medicine at Hofstra Northwell, New York, USA.
⁶ Patient research partner, USA.
⁷ Savvy Cooperative, New York, New York, USA; Patient research partner, USA.
⁸ Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
⁹ Rheumatology Unit, The Royal Children's Hospital, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Australia; Murdoch Children's Research Institute, Melbourne, Australia.
¹⁰ Hospital for Special Surgery, New York, USA; Weill Medical College of Cornell University, New York, USA.
¹¹ Wilhelmina Children's Hospital/ UMC Utrecht, Utrecht, The Netherlands; Utrecht University, Utrecht, The Netherlands.
¹² School of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, Canada; Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Canada; Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada; Institut du savoir Montfort, Ottawa, Canada.
¹³ Department of Pediatrics, University of Washington, Seattle, WA, USA; Seattle Children's Hospital, Seattle, Washington, USA.

PMID: 38071831
DOI: 10.1016/j.semarthrit.2023.152340

Abstract

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.

Keywords: Disease activity; JIA; OMERACT; Overall well-being; Patient perspective.

MeSH terms

Arthritis, Juvenile*
Consensus
Humans
Outcome Assessment, Health Care
Perception
Rheumatology*