Use and subjective experience of the impact of a motor-assisted movement exerciser in people with amyotrophic lateral sclerosis: a multicentre observational study

Abstract

Objective: Motor-assisted movement exercisers (MME) enable device-assisted physical therapy delivered in domestic settings. This observational study captures the frequency of MME use, subjective experience of the therapy provided and MME recommendation. Method: The prospective cohort study was implemented at ten ALS centres (02/2019-10/2020) and coordinated by the research platform Ambulanzpartner. Participants assessed symptom severity, frequency of use and subjective benefit of therapy on a numerical rating scale (NRS, 0 to 10 points). The likelihood of recommending the MME was determined by the Net Promotor Score (NPS). Results: Data for 144 participants were analysed. Weekly MME applications ranged from 1 to 4 in 41%, 5 to 7 in 42% and >7 in 17% of participants. Particularly positive results were achieved in the following domains: amplification of a sense of achievement (67%), diminution of the feeling of having rigid limbs (63%), diminution of the feeling of being immobile (61%), improvement of general wellbeing (55%) and reduction of muscle stiffness (52%). Participants with more pronounced self-rated muscle weakness were more likely to note a beneficial effect on preservation and improvement of muscle strength under MME treatment (p<0.05). The NPS for the MME was high (+61). Conclusion: High-frequency MME-assisted treatment (defined as a minimum of five sessions a week) was administered in the majority of participants (59%) in addition to physical therapy. Most patients stated to have achieved their individual objectives of MME intervention as evidenced by a high level of satisfaction. The results underline the justification for extended MME treatment as part of the ALS care concept.

ALSFRS-R-SE: an adapted, annotated, and self-explanatory version of the revised amyotrophic lateral sclerosis functional rating scale

“…Muscle weakness is caused predominantly by the loss of the second motor neuron. Muscle stiffness often, but not always, results from spasticity, indicating degeneration of the upper neuron [39]. If possible, complaints that are not related to ALS-such as orthopedic issues that might affect functional areasshould be excluded from the evaluation.…”