Abstract
Aims: This paper is a qualitative investigation that aims to investigate the lived experience of fatigue in patients with motor neurone disease—a progressive and fatal neurological condition.Background: Fatigue is a disabling symptom in motor neurone disease (MND) that affects a large number of patients. However, the term “fatigue” is in itself imprecise, as it remains a phenomenon without a widely accepted medical definition. This study sought to investigate the phenomenon of fatigue from the perspective of the MND patient.Methods: Ten patients with MND participated in semi-structured recorded interviews at a regional neuroscience center in Liverpool, UK. Transcripts analysis was broadly informed by the principles of interpretative phenomenological analysis (IPA).Findings: Fatigue was unanimously explained to be disabling and progressive phenomenon. Participants described two forms of fatigue: whole-body tiredness or use-dependent reversible muscle weakness related to exertion of limb and bulbar muscles. Both weakness and whole-body tiredness could be experienced simultaneously, and patients used the terms “fatigue” and “tiredness” interchangeably. Alongside descriptions of fatigue themes of Adaptation, Motivation, Avoidance, Frustration and Stress were revealed. Fatigue could be defined as “reversible motor weakness and whole-body tiredness that was predominantly brought on by muscular exertion and was partially relieved by rest.”Conclusion: The results of this study support a multi-dimensional model of fatigue for patients with MND. Fatigue appears to be experienced and explained in two ways, both as an inability to sustain motor function and as a pervasive tiredness. Fatigue was only partially relieved by rest and tended to worsen throughout the day. It is crucial that MND care practitioners and researchers appreciate the semantic dichotomy within fatigue.
Highlights
motor neurone disease (MND) is a progressive and fatal neurodegenerative disease without a known cure or effective treatment
Participants described two forms of fatigue: whole-body tiredness or use-dependent reversible muscle weakness related to exertion of limb and bulbar muscles
It is crucial that MND care practitioners and researchers appreciate the semantic dichotomy within fatigue
Summary
MND is a progressive and fatal neurodegenerative disease without a known cure or effective treatment. It is clinically characterized by progressive muscular weakness leading to death by respiratory insufficiency, usually within 3 years of symptom onset (Haverkamp et al, 1995). Fatigue is one of the most commonly reported symptoms in MND (Lou et al, 2003; Ramirez et al, 2008), with one study reporting prevalence of clinically significant fatigue to be present in 44% of patients (McElhiney et al, 2009). The term “fatigue” is commonly used, though it is not well-defined as the distinct experiences of tiredness, exhaustion, weakness, and weariness may all be described as “fatigue.”
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