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

https://doi.org/10.1016/j.ijnurstu.2007.06.007Get rights and content

Abstract

Objective

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.

Methods

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.

Results

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.

Conclusion

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.

Section snippets

What is already known about the topic?

  • Fatigue is besides pain the most disturbing symptom for patients with Rheumatoid Arthritis.

  • Even in a well-controlled rheumatoid arthritis (RA) population the level of fatigue can be high.

What this paper adds

  • RA related fatigue is different from fatigue as experienced before having RA.

  • RA patients manage fatigue by ‘trial and errror’.

  • RA patients do not communicate fatigue explicitly with health professionals.

Patients and methods

Thirty-one consecutive patients, attending the rheumatology outpatient clinic, were invited to participate in this study by telephone. Selection criteria were: diagnosis of RA, ability to speak and read the Dutch language, no previous history of a psychiatric illness, and willingness to participate in the study. Experiencing fatigue was not a criterion for inclusion. Patients completed written questionnaires at home prior to their visit to the outpatient clinic. Interviews, lasting 30–60 min,

Study population

Out of 31 patients who were contacted by phone, 30 patients agreed to participate. One patient was excluded from the study because of a psychiatric disorder, so finally 29 patients were enrolled.

Participating patients had a mean age of 59 years (range 36–80 years, S.D. 11.9); the majority were women, lived together with a partner and had an elementary or secondary education. A quarter of the respondents were retired and almost half of the group used family care. The majority of the patients had

Discussion

The results of this study show that fatigue is an unpredictable, almost daily experience for RA patients with a great impact on quality of life, while patients struggle alone to manage it. Furthermore, half of the respondents described fatigue as even more bothersome than pain. The concept of fatigue is described as physical, exhausting and frustrating, having consequences for roles, relationships, leisure time, with emotional aspects, requiring everyday adaptation. Respondents mentioned having

Acknowledgements

The authors would especially like to thank the RA patients who made this study possible and Anita van Rossum (head nurse of the clinical department of rheumatology) for the use of her facilities for this study.

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