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Outcomes generated by patients with rheumatoid arthritis: How important are they?

Hewlett, Sarah; Carr, Maggie; Ryan, Sarah; Kirwan, John R.; Richards, Pam; Carr, Alison; Hughes, Rod


Maggie Carr

Sarah Ryan

John R. Kirwan

Pam Richards

Alison Carr

Rod Hughes


Background: It has been shown previously that patients with rheumatoid arthritis (RA) can generate a wide range of outcomes that they consider important in treatment. It is not known if these outcomes are generally important in the wider RA patient community. Objectives: (1) To examine whether recent patient-generated outcomes are generalizable within a wider RA population; (2) to assess the relative importance of each outcome; and(3) to explore whether any important outcomes have been omitted. Methods: A questionnaire, listing 23 outcomes previously generated by RA patients, was distributed through three rheumatology centres in the UK. Patients gave an importance score to each outcome (0-3), selected their top three most important outcomes, and then listed any outcomes of personal importance that were missing.
Results: 323 questionnaires were returned (65%). All outcomes were deemed important. Independence, pain, and mobility were most frequently selected by patients in their top three outcomes but were not chosen by 61-66% of patients. The next most commonly chosen outcomes related to feeling well and fatigue. Factor analysis revealed six reasonably distinct groupings: general well-being (11.9% explained variance), day-to-day functioning(10.6%), emotional and psychological well-being (10.6%), social role and confidence (10%), physical symptoms (9.5%) and medication issues (7.9%).
Conclusion: Outcomes generated by patients as important in RA, are generalizable and inclusive. The most important (independence, pain and mobility) are routinely treated and measured. The next most important (feeling well, fatigue) are infrequently addressed and deserve urgent consideration for measurement, treatment and research.


Hewlett, S., Carr, M., Ryan, S., Kirwan, J. R., Richards, P., Carr, A., & Hughes, R. (2005). Outcomes generated by patients with rheumatoid arthritis: How important are they?. Musculoskeletal Care, 3(3), 131-142.

Journal Article Type Article
Publication Date Aug 1, 2005
Journal Musculoskeletal Care
Print ISSN 1478-2189
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 3
Issue 3
Pages 131-142
Keywords rheumatoid arthritis, patient outcomes
Public URL
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