Not All Fatigue Is Created Equal: The First Step of Palliative Symptom Management for Adults with Multiple Sclerosis
Journal of Pain and Symptom Management(2020)
Abstract
•Justify the need for palliative symptom management and intervention development for adults with multiple sclerosis.•Identify current research findings on multiple sclerosis-related fatigue. Of the 2.3 million individuals globally with multiple sclerosis (MS), more than 80% struggle with MS-related fatigue, negatively impacting daily life, function, and quality of life. However, advancing research in this area is hindered by the lack of a consensus definition of MS-related fatigue. To clarify the concept of MS-related fatigue in adult patients and propose a conceptual definition that reflects the research evidence-base. Rodgers' evolutionary method of concept analysis. A literature search was conducted in PubMed®, CINAHL, and Scopus® Medline databases for all years up to March 2019. Search terms included “multiple sclerosis-related fatigue,” “MS-related fatigue,” “primary and secondary fatigue,” and “cytokine related fatigue.” Articles were included that reported original research. Thirteen articles were excluded for off-label use of medications or the use of experimental therapy that involved stimulating internal receptor sites in the brain. The initial search yielded 1,521 articles. After screening articles for eligibility and removing duplicates, 24 articles were identified. Six antecedents were identified: physical functioning, comorbidities, cognitive functioning, environmental, psychosocial, and financial stressors. Three attributes contributed to MS-related fatigue, including physical limitations, cognitive alterations, and emotional distress. The consequences of MS-related fatigue included an increase or decrease in disability, financial toxicity, quality of life, self-esteem, self-care, healthcare management, and social isolation. The literature reflects a gap in ways to measure MS-related fatigue and a cohesive definition between disciplinary healthcare teams. Surrogate terms do not encompass a true meaning of the concept of MS-related fatigue. There are multiple questionnaires available to healthcare professionals to measure MS-related symptoms. However, these self-report questionnaires are used in conjunction with one another, and there is not a tool that conceptually measures MS-related fatigue. Our multidimensional concept of MS-related fatigue can further palliative care research and intervention development that targets multiple measurement outcomes and may ultimately improve quality-of-life in this population.
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Key words
multiple sclerosis,palliative symptom management,fatigue
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