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Refractory inflammatory arthritis definition and model generated through patient and multi-disciplinary professional
Hema Chaplin1, Ailsa Bosworth2, Carol Simpson3
1Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.
Plos One
|August 9, 2023
Summary
A new definition for Refractory Inflammatory Arthritis was developed with input from patients and healthcare professionals. This broader definition includes biopsychosocial factors beyond just disease activity, improving care for Rheumatoid Arthritis and Polyarticular Juvenile Idiopathic Arthritis.
Area of Science:
- Rheumatology
- Clinical Definitions
- Patient-Reported Outcomes
Background:
- Existing definitions of Refractory Disease in Rheumatoid Arthritis (RA) lack applicability to Polyarticular Juvenile Idiopathic Arthritis (pJIA).
- Current definitions do not incorporate multidisciplinary professional and patient perspectives.
Purpose of the Study:
- To redefine Refractory Disease for RA and pJIA using a Delphi methodology.
- To establish a consensus-driven definition involving patients and healthcare professionals.
Main Methods:
- A three-round Delphi process, including a nominal group and online surveys (2019-2020), was used to achieve consensus.
- Voting encompassed the name, treatment/inflammation criteria, and symptom/impact domains.
- The proposed definition was theoretically applied via a scoping exercise.
Main Results:
- The consensus name was Refractory Inflammatory Arthritis.
- Six key domains were identified: Disease Activity, Joint Involvement, Pain, Fatigue, Functioning/Quality of Life, and Disease-Modifying Anti-Rheumatic Drug Experiences.
- Eighteen components were selected to capture the multifaceted presentation in RA and pJIA. The definition showed good utility when applied to datasets.
Conclusions:
- Refractory Inflammatory Arthritis is a broader concept than low disease activity, encompassing biopsychosocial factors and persistent inflammation/symptoms.
- The new definition requires further refinement to serve as a classification tool for identifying patients with unmet needs.
