Exploring and redefining refractory arthritis: A qualitative study
Research type
Research Study
Full title
Exploring and redefining refractory arthritis: A qualitative study
IRAS ID
237292
Contact name
Sam Norton
Contact email
Sponsor organisation
King’s College London
Duration of Study in the UK
1 years, 6 months, 00 days
Research summary
Disease activity in inflammatory arthritis is defined by a mixture of biological markers of inflammation and self-reported symptoms. The treatment target is to achieve sustained low disease activity. Patients who do not achieve this despite drug treatments are referred to as having ‘refractory’ disease. Current treatments for arthritis are highly effective to reduce inflammation. However, many patients report persistent physical and emotional symptoms, such as pain and fatigue, even when levels of inflammation are low. This discrepancy between inflammation and persistent symptoms is not understood or accounted for in the existing definition of refractory arthritis. The aim of the study therefore is to refine the definition of ‘refractory’ disease, through interviews and workshops to a) understand its meaning and implications for patients, b) incorporate a greater focus on physical and emotional symptoms, identify uncertainties about the terminology, and c) achieve consensus on definitions across healthcare professionals and patients. Target populations will be patients with active disease who are being treated with at least one biologic (after previously not responding to two DMARDs) recruited from four Rheumatology outpatient clinics (King’s College Hospital, Guy’s and St Thomas’ Hospitals, University College London Hospital and Haywood Hospital). Healthcare professionals will also be invited from these sites and a national network of adolescent rheumatology professionals to participate in focus group(s) to elicit their perspectives. In conjunction with the National Rheumatoid Arthritis Society, a workshop with a broad range of stakeholders will be held to achieve a consensus definition of refractory arthritis incorporating persistent physical and emotional symptoms. The Delphi method enables concerns and uncertainties about the emergent themes from the interviews to be quantified and can indicate preferred terminology and salient variables to redefine refractory arthritis.
REC name
London - Hampstead Research Ethics Committee
REC reference
18/LO/1171
Date of REC Opinion
20 Jun 2018
REC opinion
Favourable Opinion