Patient perception of bodily functions in multiple sclerosis: gait and visual function are the most valuable

TLDR

Multiple sclerosis presents with heterogeneous clinical manifestations, and while many outcome measures have been developed for therapy, few studies have examined the value of bodily functions from the patients’ perspective. The study surveyed 166 MS patients (84 with disease duration <5 years and 82 with >15 years) who weighted 13 bodily functions, and compared these weights to their disability scores on the United Kingdom Disability Scale. Patients prioritized lower‑limb function highest, followed by visual and cognitive functions, yet these priorities did not correlate with objective disability scores, underscoring that ambulation‑focused scales capture a key patient‑valued dimension and that visual function should be more emphasized.

Abstract

Multiple sclerosis is a heterogeneous disease with varying clinical picture. There have been substantial efforts to develop outcome measurements for therapeutic interventions but very few studies have addressed the value of bodily functions from the patient perspective. In a randomly selected cohort of early (<5 years, n=84) and longer lasting disease courses (>15 years, n=82) patients we asked for a weighting of 13 bodily functions and compared results with actual disability as measured by the United Kingdom Disability Scale. Lower limb function was given the highest priority in both patient groups followed by visual functioning and cognition especially in longer lasting MS. Actual disability did not correlate with the given priorities indicating that experienced deficits do not influence the subjective ratings of bodily functions. These results underline that ambulation-focused scales in MS represent a key dimension from the patient perspective. Visual functioning should be taken more into account.