The chronic fatigue experience of patients with CFS/ME or with IBD and general population subjects: A quantitative and qualitative analysis of the discourse before the design of a chronic asthenia scale

Objectives. - Asthenia is considered chronic when it extends over time for more than six months and remains unresolved by rest. Currently, chronic asthenia is difficult to assess as the existing scales are either too generic or, conversely, designed for asthenia associated with a specific pathology that hinders the correct evaluation of the associated fatigue. This is, however, problematic when it comes to chronic asthenia - whether or not it is associated with other chronic diseases - because it constitutes complex, multidimensional and largely subjective phenomena, all of which account for the lack of consensus in the literature about this condition. Therefore, any elaboration of a tool designed to evaluate fatigue in myalgic encephalomyelitis (ME) requires a thorough exploration of the patients' experience of this condition. This was precisely the main goal of the present study. Patients, materials and methods. - Semi-structured interviews were collected from 31 individuals: a group of patients with ME (n = 9), a group of patients with inflammatory bowel disease (IBD, n = 12), and a group of control participants (n = 10), in which fourteen men with a mean age of 39.33 (+/- 11.30) and seventeen women with a mean age of 43.5 (+/- 12.8). The interviews focused on their perception of their relatives' fatigue and the description of their own fatigue. For the two groups of patients (ME, IBD), two additional themes were discussed: the evolution of their fatigue and their relationships with healthcare professionals. Two methods were used to analyze these interviews: lexicometric analysis (using IRaMuTeQ software) and an interpretative phenome-nological analysis (IPA). This choice of combining quantitative and qualitative methods limits the subjectivity in discourse analysis. Results. - The lexicometric analysis revealed a significantly different content of discourse depending on the group of participants. The discourse of control participants focused on "normal" fatigue, which results from daily activities and can be resolved with rest. The IBD group emphasized the importance of the quality of sleep, the necessity of more frequent rest and fatigue-related pain. Finally, the discourse of participants in the ME group focused on the intensity of the manifestations of fatigue and the unpredictability of the need for rest which affects their everyday life. The interpretative phenomenological analysis revealed six major themes: origins of fatigue, different types of asthenias, its manifestations, its consequences, recovery time, and relationships with healthcare professionals. For all these themes, the discourses of ME group suggested a more intense and unpredictable fatigue than was the case for the two other groups. Taken together, the two types of analyses converged toward four common dimensions of fatigue that are experienced by the two groups of patients (as compared to the control group): constraints generated by chronic fatigue, consequences for their physical condition, their personal life, and their interpersonal relationships. These four dimensions appeared in the discourses of both patient groups, but the expressions about their fatigue and the relative impact were different. Conclusion. - This study demonstrated that the experience of chronic asthenia is more complex than what can be assessed using existing specific tools, but also more specific than the dimensions of fatigue comprised in generic tools. These findings, therefore, confirmed the necessity for the developments of prospective assessment scales of chronic asthenia that take into account the patients' subjective experience of fatigue. ?C 2022 Elsevier Masson SAS. All rights reserved.