Fatigue as experienced by patients with rheumatoid arthritis (RA): a qualitative study

Interest in fatigue research has grown since the finding that fatigue is, besides pain, the symptom most frequently reported by patients with rheumatoid arthritis (RA). The aim of this study was to explore the experience of fatigue from the patients' perspective.

Twenty-nine patients with RA filled-out written questionnaires on fatigue severity, disability, quality of life and sleep disturbance, and disease activity was calculated using the Disease Activity Score (DAS28). All patients were individually interviewed and asked about fatigue. Qualitative analyses were completed using software program "The Observer". Basic codes, a code plan and coding rules were developed by two researchers through a consensus-based review process. Frequencies of the central codes were calculated by the program SPSS.

RA fatigue is verbalised as a physical everyday experience with a variety in duration and intensity. Its sudden onset and exhausting nature is experienced as frustrating and causing anger. Patients mentioned having RA as the main cause of their fatigue. The consequences of fatigue are overwhelming and influence patients' everyday tasks, attitudes and leisure time. Patients described how they have to find their own management strategies by trial and error and described pacing and rest, relaxation and planning activities as the most appropriate interventions. Downward comparison and acceptance as part of the disease are also reported as successful coping strategies for fatigue. Most patients did not discuss fatigue with clinicians explicitly, accepting that they were told that fatigue is part of the disease and believing that they have to manage it alone.

The results show that RA fatigue is experienced as being different from "normal" fatigue. Patients do not expect much support from health care professionals, assuming that they have to manage fatigue alone as it is part of the disease. These results will help professionals caring for RA patients to communicate about fatigue, to explore the nature of fatigue individually and to develop tailored interventions.