Perceptions on the value of bodily functions in multiple sclerosis

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Value‐based health care is increasingly recognized as crucial in patient‐centered disease management.1 In neurological diseases presenting with a plethora of symptoms, the value of bodily functions for a given patient might thus be a guide for clinical management. Affecting approximately 2.5 million people worldwide, multiple sclerosis (MS) is the most common autoimmune disorder of the central nervous system (CNS).2 Depending on the location of the lesions in the CNS, the disease can lead to multiple impairments in several functional systems resulting in a heterogeneous clinical picture. Impairments may vary in number, severity, and duration between individuals and also within an individual over the course of disease.2 Further, the impact of impairments on activity and participation varies between individuals depending on subjective values and preferences, psychosocial status, and needs. Therefore, it is highly relevant to know the value of bodily functions to develop treatment concepts tailored to individual needs.
In current clinical practice, diagnostic measures are heavily based on the executing health professionals. The Expanded Disability Status Scale (EDSS) is today's most commonly used and well‐established instrument monitoring disability and disease progression. It has been a major outcome of MS treatment trials but comes with multiple limitations and weaknesses overemphasizing ambulation and underestimating neuropsychiatric symptoms.3 While the MS functional composite (MSFC) is a valuable more objective addition to the EDSS,4 its 3 tests include 2 motor system assessments and a neurocognitive screening measure for which the clinical relevance is not clear. Patient‐reported outcome measures (PROMS) might fill the gap of patient‐centered impairment measures. However, they only provide an indirect view on patients’ value priorities of bodily functions. Little work has been performed on this question. A small early study in 50 patients and physicians has shown that physicians overemphasize physical functioning while mental functioning was much more relevant to patients.5 Subsequently, it was shown in a single‐center cross‐sectional study that patients rate lower limb function followed by visual functioning and cognition to be most relevant.6 Interestingly, neither disability nor disease duration did influence this priority list which may indicate that values of bodily functions might be quite stable despite possibly changing disability.
This study aims to provide deeper insights in the value of bodily functions by comparing patients’ and doctors’ perceptions of the importance of bodily functions and analyzing the possible change in priorities through a longitudinal follow‐up. A multicenter approach was applied together with a computer adaptation of the former described paper‐based scale increasing the robustness of the measurement.

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