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

Abstract

ObjectivesAlthough 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.MethodsThirteen 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.ResultsInterviewees 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.ConclusionsThis 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.

Reducing arthritis fatigue impact: two-year randomised controlled trial of cognitive behavioural approaches by rheumatology teams (RAFT)

“…The usual care fatigue booklet18 in this RCT was written by the team following the original RCT 12. A qualitative study suggested that patients felt the booklet made them feel more responsible for taking actions to manage their fatigue 34. The brief booklet discussion with the nurse in this RCT may have had a greater effect than a patient picking up a booklet in clinic.…”

Group cognitive–behavioural programme to reduce the impact of rheumatoid arthritis fatigue: the RAFT RCT with economic and qualitative evaluations

“…31 The usual-care booklet, written after the first RCT and based on the results of that intervention, 45 has been available in rheumatology units since 2011 and was therefore used as a 'usual-care' active control in the present study. Although the booklet has never been subjected to rigorous effectiveness testing, a recent qualitative study 88 suggested that patients felt that it made them think differently about their fatigue. Patients in the study 88 reported that having a discussion of the booklet with a researcher made them consider taking responsibility for managing some aspects of their fatigue and try the suggestions the booklet contained.…”

“…Although the booklet has never been subjected to rigorous effectiveness testing, a recent qualitative study 88 suggested that patients felt that it made them think differently about their fatigue. Patients in the study 88 reported that having a discussion of the booklet with a researcher made them consider taking responsibility for managing some aspects of their fatigue and try the suggestions the booklet contained. Although the focus of the qualitative study was for patients to review the booklet for research, it raises the possibility that the brief booklet discussion with the health professional (usual care in this RCT) may have delivered an effect over and above a patient simply picking the booklet up from the clinic display.…”

Remotely delivered cognitive behavioural and personalised exercise interventions for fatigue severity and impact in inflammatory rheumatic diseases (LIFT): a multicentre, randomised, controlled, open-label, parallel-group trial

“…Also, the risk of nocebo effects in relation to our comparator did not appear substantial. As a minimum, participants in the usual care group received established educational materials, which have previously been associated with a positive impact 30 and, within this trial, were related to improved outcomes compared with the baseline score and equivalent attrition rates. Second, 12% of participants given PEP and CBA discontinued their respective therapies due to multiple reasons.…”