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. OTHER PUBLICATIONS OF THIS RESEARCH: Kirwan JR, Ahlmen M, de Wit M, Heiberg T, Hehir M, Hewlett S, Katz PP, Minnock P, Quest EM, Richards P. Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. Journal of Rheumatology 2005;32(11):2246-9. Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmen M, Boers M, Minnock P, Saag K, Shea B, Suarez Almazor M, Taal E. Outcomes from the Patient Perspective Workshop at OMERACT 6. Journal of Rheumatology 2003;30(4):868-72.
ContributorsKirwan, J. R. Hewlett, S. E. Heiberg, T. Hughes, R. A. Carr, M. Hehir, M. Kvien, T. K. Minnock, P. Newman, S. P. Quest, E. M. Taal, E. Wale, J.
Disease Category: Rheumatology
Disease Name: Rheumatoid arthritis
Age Range: Unknown
Sex: Either
Nature of Intervention: Not specified
- Conference participants
- Consumers (patients)
- Recommendations for outcome measures (measurement/how)
- COS for clinical trials or clinical research
- Semi structured discussion
Semi structured discussion: workshop and plenary session meeting