COMET Initiative | 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

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.

Aim

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.

Contributors

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

Publication

Journal: Seminars in Arthritis and Rheumatism
Volume: 64
Issue:
Pages: -
Year: 2024
DOI: 10.1016/j.semarthrit.2023.15234

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This work including conference attendance support for the OMERACT 2023 meeting was supported by the OMERACT organization, we are grateful for their support. OMERACT is an international organization that develops measures for clinical trials and receives arms’ length funding from pharmaceutical companies.

Health Area

Disease Category: Rheumatology

Disease Name: Juvenile idiopathic arthritis (JIA)

Target Population

Age Range: 15 - 24

Sex: Either

Nature of Intervention: Drug

Stakeholders Involved

- Clinical experts
- Consumers (patients)
- Methodologists
- Researchers

Study Type

- Definition

Method(s)

- Consensus conference
- Survey

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