Usage and subjective experience of the effect of motor-supported movement exercisers among people with amyotrophic lateral sclerosis. Results of a multi-centric observational study.

The importance of defining patient-reported outcomes (PROs) is growing for clinical practice in neurorehabilitation and care research. PROs provide reports from patients on their own health status, quality of life and functional status in relation to medical care and treatment. Special tools and instruments known as patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are used for measurement.

Maier and colleagues from the Centre for Amyotrophic Lateral Sclerosis (ALS) at Charité - Universitätsmedizin Berlin and Ambulanzpartner, the platform for care and research in rare neurological diseases, investigated the effect of additional assistive mobility training in patients with ALS in a recently published study. Here, researchers used PROMs and PREMs to capture subjective experiences of the therapy and how likely users were to recommend it.

The results, which were published in Nature Scientific Reports, show that ALS patients benefit greatly from assistive mobility training. For this purpose, data from 144 participants was analysed. 41% of participants used the movement exerciser 1 to 4 times per week, 42% 5 to 7 times and 17% more than 7 times per week. Particularly positive results were recorded in the following areas: increase in sense of accomplishment (67%), reduction in the feeling of having stiff limbs (63%), reduction in feeling of being immobile (61%), improvement in general well-being (55%) and reduction in muscle stiffness (52%). Participants with pronounced muscle weakness were more likely to report that mobility training had a positive effect on maintaining and improving their muscle power (p < 0.05). Most patients stated that they had achieved their individual therapy goals, which was reflected in a high level of satisfaction. The recommendation rate was high. 71.6% of patients (n = 101) strongly recommended the training.

The PREMs also provided indications that training was associated with a resolution of perceived inactivity. A main advantageous feature of mobility training in this context is the integration of passive and assistive exercises, made possible thanks to motor support. Due to the severity and progression of symptoms in ALS, participation in a purely active exercise programme would probably not have been possible for most participants in the study. In view of this fact, the movement trainer gains in value and importance for the therapy. The intervention therefore differs significantly from conventional home training programmes.

Although the movement exerciser is a medically indicated device, it is not yet regularly given to ALS patients. Further research is needed to clarify what exactly the barriers are to early therapeutic implementation and more consistent care. However, it is clear that the movement exerciser contributes to a demonstrable improvement in the quality of life with ALS and deserves more attention in the context of standard care in future. The results of the study support the justification of extended therapy as part of a holistic treatment approach for ALS.