Multiple sclerosis (MS) is a chronic neuroinflammatory disease affecting the central nervous system and is the main non-traumatic cause of disability in working age populations. Walking, or mobility, is frequently listed as an important outcome for people with MS. It is more than just steps, it is a purposeful activity that allows people to engage in social situations, leisure activities and to remain independent, thus exerting a significant impact on their sense of self and identity. However, a notable lack of mobility outcome measures exist.
Data derived from wearable devices offers the potential to develop new algorithms that quantify mobility through digital mobility outcome measures (DMOs). This allows us to monitor people more frequently, in environments that reflect their lived experience. The development of DMOs may be valuable, novel measures of progression, symptom tracking, functional mobility, falls and more.
Central to the development of new measures, is that the patient perspective is at the core. People with MS should help identify which DMOs should be prioritised and whether they are clinically meaningful. Critically, it is necessary to ensure that the needs of under-served groups are represented during this process, to develop measures that truly depict people’s needs.
This project will utilise interviews with people with MS, and a Delphi process, to address evidence gaps in ongoing work in DMO development. It aims to: A) Identify DMOs that measure aspects of health meaningful to people with MS and healthcare professionals. We will explore the meaningfulness of DMOs to establish the relevance of discrete DMOs to measure changes in mobility-related activities of daily living. B) Ensure diversity in development and implementation of digital mobility assessment and the value of DMOs. We will seek the views and opinions of the acceptability and utility of DMOs in groups that are typically under-served in research.