JMIR Publications

ABSTRACT

Background:

Motor neuron disease (MND) is a progressive and incurable neurodegenerative disease. There is an urgent need for sensitive measures of disease progression that can be used to robustly evaluate new treatments. Measures of physical function, derived from digital devices, are beginning to be used to assess disease progression. Given that MND is relatively rare, there is value in establishing a consensus approach to standardizing use of such devices.

Objective:

This systematic review explored how digital devices are being used to quantify free-living physical behaviour in people living with MND (plwMND). We evaluated the feasibility of using the devices and assessed the implications for monitoring physical behaviour for future design of clinical trials.

Methods:

Systematic searches of four databases were performed in October 2023 and June 2024. Peer-reviewed articles (including pre-prints) written in English language with plwMND using digital devices to assess free-living physical behaviour were included.

Results:

Twelve articles met inclusion criteria for data extraction. Studies used traditional endpoints focusing on duration, intensity, and frequency of physical activity or non-traditional endpoints focusing on features of an individual’s movement patterns. Greater monitoring frequencies and improved endpoint sensitivity was shown to provide smaller sample size requirements and shorter durations for hypothetical clinical trials. PlwMND found using devices acceptable and reported low burden. The perspectives of other end-users and implications on clinical practice were not explored.

Conclusions:

Remote monitoring of free-living physical behaviour in plwMND is in its infancy but has exciting potential to quantify physical function in MND. It is essential to develop a consensus statement within the MND community, working towards agreed and standardised methods for data collection, analysis and reporting.