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Incorporating the patient perspective into outcome assessment in rheumatoid arthritis: Progress at OMERACT 7

Kirwan, John R.; Hewlett, Sarah; Heiberg, Turid; Hughes, Rod; Carr, Maggie; Hehir, Maggie; Kvien, Tore; Minnock, Patricia; Newman, Stanton; Quest, Enid; Taal, Erik; Wale, Janney

Authors

John R. Kirwan

Turid Heiberg

Rod Hughes

Maggie Carr

Maggie Hehir

Tore Kvien

Patricia Minnock

Stanton Newman

Enid Quest

Erik Taal

Janney Wale



Abstract

The Patient Perspective Workshop at OMERACT 7 addressed the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease. A particular emphasis at this workshop was placed on fatigue, but other areas included well-being, real-time assessment, patient priorities, and needs in early and late disease. Through a series of overview presentations, discussion groups, and plenary sessions, workshop participants (who included 19 patients) clarified what is known and what are the outstanding issues for future research. The importance of further work on clarifying the validity of fatigue measurements in RA has been confirmed, and with at least one suitable instrument available there will be strong pressure to include fatigue in a redefined core set of outcome measures in RA. In the other 4 areas covered there are important issues that can be addressed by enquiry and experiment and that together provide a challenging research agenda. At the final plenary session the OMERACT conference endorsed, by a large majority, the proposal that fatigue may warrant consideration for inclusion in the OMERACT core set for RA.

Journal Article Type Article
Publication Date Nov 1, 2005
Journal Journal of Rheumatology
Print ISSN 0315-162X
Publisher Journal of Rheumatology
Peer Reviewed Peer Reviewed
Volume 32
Pages 2250-2256
Keywords rheumatoid arthritis, patient perspective, patient collaboration, well-being, real-time assessment
Public URL https://uwe-repository.worktribe.com/output/1046618
Publisher URL http://www.jrheum.com/abstracts/abstracts05/2250.html