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Rheumatology outcomes: The patient's perspective

Carr, Alison; Hewlett, Sarah; Hughes, Rod; Mitchell, Helene; Ryan, Sarah; Carr, Maggie; Kirwan, John R.


Alison Carr

Rod Hughes

Helene Mitchell

Sarah Ryan

Maggie Carr

John R. Kirwan


Our aim was to explore the patient's perspective of outcomes in rheumatoid arthritis (RA) to identify which outcomes are important to patients and how patients calibrate what constitutes a meaningful change in those outcomes. A qualitative study was performed using focus groups in 5 clinical centers in different geographical locations in the UK. Each group contained 6 to 9 patients with RA who were purposefully sampled to include men and women with a range of age, disease duration, functional disability, work disability, and current disease activity. Each focus group lasted around 1 h and addressed 3 questions: What outcomes from treatment are important to RA patients? What makes patients satisfied or dissatisfied with a treatment? How do patients decide that a treatment is working? Patients identified as important not only physical outcomes such as pain and disability, but also fatigue and a general feeling of wellness. The relative importance of these outcomes depended on the stage of disease and on specific situations, such as a disease flare. Satisfaction was influenced by communication, access to treatment, and treatment efficacy. Treatment efficacy was related to symptom reduction, with the magnitude of reduction necessary for efficacy dependent on the stage of disease. For example, large changes were deemed necessary with disease of long duration, while in early disease, even small changes could be important. Our data support existing knowledge of the importance of pain and mobility as treatment outcomes, but raise new and important issues: Some outcomes of importance to patients are not currently measured and there are no measures available to capture them. Existing measures need to be calibrated to take account of the differing importance of outcomes at different stages of disease and variations in the magnitude of change within the same outcome that indicate treatment efficacy.


Carr, A., Hewlett, S., Hughes, R., Mitchell, H., Ryan, S., Carr, M., & Kirwan, J. R. (2003). Rheumatology outcomes: The patient's perspective. Journal of Rheumatology, 30(4), 880-883

Journal Article Type Article
Publication Date Apr 1, 2003
Journal Journal of Rheumatology
Print ISSN 0315-162X
Publisher Journal of Rheumatology
Peer Reviewed Peer Reviewed
Volume 30
Issue 4
Pages 880-883
Keywords rheumatology, patients perspective
Public URL
Publisher URL
Additional Information Additional Information : Demonstrated that outcomes important to patients differ from those that are important to and routinely measured by health professionals. Oral presentations in Australia, USA and Portugal. Led to funding for PhD studentship on well-being and studies on fatigue (Arthritis Research Campaign).