title: Rheumatology outcomes: the patient's perspective.
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.
authors.affiliation: Academic Rheumatology, University of Nottingham, Nottingham, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Carr
authors.forename: Sarah
authors.initials: S
authors.lastname: Hewlett
authors.forename: Rod
authors.initials: R
authors.lastname: Hughes
authors.forename: Helene
authors.initials: H
authors.lastname: Mitchell
authors.forename: Sarah
authors.initials: S
authors.lastname: Ryan
authors.forename: Maggie
authors.initials: M
authors.lastname: Carr
authors.forename: John
authors.initials: J
authors.lastname: Kirwan
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001172:Arthritis, Rheumatoid / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010043:Outcome and Process Assessment, Health Care / Q000379:methods*; D010358:Patient Participation; D017060:Patient Satisfaction; D010361:Patients / Q000523:psychology; D036301:Qualitative Research; D016032:Randomized Controlled Trials as Topic / Q000523:psychology*