Abstract: Rheumatology Outcomes: The Patient's Perspective

Rheumatology Outcomes: The Patient's Perspective

ALISON CARR, SARAH HEWLETT, ROD HUGHES, HELENE MITCHELL, SARAH RYAN, MAGGIE CARR, and JOHN KIRWAN

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 purposively 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. (J Rheumatol 2003;30:880-3)

Key Indexing Terms:

RHEUMATOID ARTHRITIS
OUTCOME AND PROCESS ASSESSMENT
RANDOMIZED CONTROLLED TRIAL
PATIENT PARTICIPATION

From the University of Nottingham, Nottingham; University of Bristol, Bristol; Ashford and St Peter's Hospital Trust, Chertsey; Guy's, King's and St Thomas' School of Medicine, London; and Haywood Hospital, Stoke-on-Trent, UK.

A. Carr, PhD, Special Lecturer in Epidemiology, University of Nottingham, UK; S. Hewlett, PhD, ARC Senior Lecturer in Rheumatology (Health Professionals), University of Bristol; R. Hughes, MD, Consultant Rheumatologist, Ashford and St Peter's Hospital Trust; H. Mitchell, BSc, Research Assistant, Guy's, King's and St Thomas' School of Medicine; S. Ryan, PhD, Consultant Nurse Rheumatology, Haywood Hospital; M. Carr, MSc, Rheumatology Nurse Practitioner, Ashford and St Peter's Hospital Trust; J. Kirwan, MD, Reader in Rheumatology, University of Bristol.

Address reprint requests to Dr. A. Carr, Academic Rheumatology, University of Nottingham, Clinical Sciences Building, City Hospital, Nottingham, NG5 1PB, UK.