Project R-16841

Development of a patient-reported outcome measure for high-level motor capacity in multiple sclerosis (Research)

People with multiple sclerosis (pwMS) with low disability often show subtle motor capacity deficits during demanding tasks that may not be detected by routine examination. Early identification of these impairments is crucial to support clinical decision-making, enable timely rehabilitation, and monitor disease progression. Patient-reported outcome measures (PROMs) are particularly valuable in this context, as they may capture perceived difficulties during higher-level motor tasks and provide an early signal of emerging impairments preceding detectable changes on standard clinical measures. This project aims to develop a PROM that sensitively detects high-level motor capacity deficits in low-disabled pwMS (EDSS 0–3.5) and to demonstrate its psychometric properties. The validated PROM will enable earlier identification of motor capacity decline, sensitive outcome assessment, and improved rehabilitation precision. A multi-phase, mixed-methods approach will be applied. Phase 1 will generate candidate items based on motor tests and PROMs identified through a literature review; these items will be evaluated using surveys and focus group meetings with low-disabled pwMS, clinicians, and researchers. Phase 2 will involve multicentre field testing of the candidate PROM in low-disabled pwMS and healthy controls to assess its psychometric properties. Participants will also perform a high-level motor capacity test battery to assess concurrent validity between perceived and objectively measured impairments.

01 July 2026 - 30 June 2028