Patients with rheumatic diseases may face barriers to discussing fatigue challenges

Discussions surrounding fatigue and its impact are not routinely raised with patients with rheumatic diseases and patients may face significant barriers to communication about the impact of fatigue, according to researchers from the United Kingdom.

A group of 12 patients from a rheumatology outpatient clinic in northeast England who had rheumatoid arthritis (RA), ankylosing spondylitis (AS) or primary Sjögren’s Syndrome (pSS) were recruited. In-depth, qualitative interviews were conducted before and after patients received the Fatigue and Arthritis booklet developed by Arthritis Research U.K. Transcripts from the interview were analyzed with coding, mapping and memoing techniques.

Analysis showed the impact of fatigue is not routinely raised by clinicians or patients during patient consultations. Patients have significant barriers to fatigue communication, including reliance on a colloquial or diverse vocabulary to define their challenges, uncertainty about how the fatigue may be related to their condition, doubt surrounding its relevance to the agenda of the consultation and belief the problem cannot be solved by an intervention. In the absence of an invitation by the clinician to elaborate, the barriers affect whether or not the patient will raise the issue of fatigue discussions and the way concerns are communicated, according to the researchers.

None of the 12 patients had been exposed to the booklet prior to the study. Feedback from participants revealed not all of them perceived the suggestions as practical help, but most reported gaining some benefit from the booklet, including improved understanding of symptoms, validation of patients’ concerns and a feeling that symptoms of fatigue could be managed.

“In detailing patients’ difficulties, [the study] reinforces prior recommendations that clinicians need to be prepared both to initiate discussions and respond sensitively to concerns about fatigue,” the researchers wrote. “It suggests that information materials such as the booklet featured in this study may be useful tools for improving communication. We encourage clinicians to give this booklet – or a similar resource to patients reporting fatigue, and to commit to discussing it at future appointments.

“More effective communication about fatigue would improve clinicians’ understanding of the burden of disease individual patients bear and facilitate improved – shared – decision-making about management options.” – by Shirley Pulawski

Reference:

Hart R, et al. Paper #1192. Presented at: American College of Rheumatology Annual Meeting; Nov. 7-11, 2015; San Francisco.

Disclosure: The researchers report no relevant financial disclosures.