What impact does written information about fatigue have on patients with autoimmune rheumatic diseases? Findings from a qualitative study.

OBJECTIVES: Although fatigue is a common symptom for people with rheumatic diseases, limited support is available. This study explored the impact of written information about fatigue, focusing on a booklet, Fatigue and arthritis.

METHODS: Thirteen patients with rheumatic disease and fatigue were recruited purposively from a rheumatology outpatient service. They were interviewed before and after receiving the fatigue booklet. Two patients, plus six professionals with relevant interests, participated in a focus group. Transcripts were analysed thematically and a descriptive summary was produced.

RESULTS: Interviewees consistently reported that fatigue made life more challenging, and none had previously received any support to manage it. Reflecting on the booklet, most said that it had made a difference to how they thought about fatigue, and that this had been valuable. Around half also said that it had affected, or would affect, how they managed fatigue. No one reported any impact on fatigue itself. Comments from interviewees and focus group members alike suggested that the research process may have contributed to the changes in thought and behaviour reported. Its key contributions appear to have been: clarifying the booklet's relevance; prompting reflection on current management; and introducing accountability.

CONCLUSIONS: This study indicated that written information can make a difference to how people think about fatigue and may also prompt behaviour change. However, context appeared to be important: it seems likely that the research process played a part and that the impact of the booklet may have been less if read in isolation. Aspects of the research appearing to facilitate impact could be integrated into routine care, providing a pragmatic (relatively low-cost) response to an unmet need.