Rheumatology outcomes: The patient's perspective

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

Abstract

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.

• Journal Article Type: Article
• Publication Date: Apr 1, 2003
• Journal: Journal of Rheumatology
• Print ISSN: 0315-162X
• Electronic ISSN: 1499-2752
• Publisher: Journal of Rheumatology
• Peer Reviewed: Peer Reviewed
• Volume: 30
• Issue: 4
• Pages: 880-883
• Keywords: rheumatology, patients perspective
• Public URL: https://uwe-repository.worktribe.com/output/1070559
• Publisher URL: http://www.jrheum.org/content/30/4/880.abstract
• 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).