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Abstract
Motor-assisted movement exercisers (MME) are devices that assist with physical therapy in domestic settings for people living with ALS. This observational cross-sectional study assesses the subjective experience of the therapy and analyzes users' likelihood of recommending treatment with MME. The study was implemented in ten ALS centers between February 2019 and October 2020, and was coordinated by the research platform Ambulanzpartner. Participants assessed symptom severity, documented frequency of MME use and rated the subjective benefits of therapy on a numerical scale (NRS, 0 to 10 points, with 10 being the highest). The Net Promotor Score (NPS) determined the likelihood of a participant recommending MME. Data for 144 participants were analyzed. Weekly MME use ranged from 1 to 4 times for 41% of participants, 5 to 7 times for 42%, and over 7 times for 17%. Particularly positive results were recorded 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-reported muscle weakness were more likely to note a beneficial effect on the preservation and improvement of muscle strength during MME treatment (p < 0.05). Overall, the NPS for MME was high (+ 61). 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 reported having achieved their individual therapeutic objectives, as evidenced by a high level of satisfaction with MME therapy. The results bolster the justification for extended MME treatment as part of a holistic approach to ALS care.
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1 Charité—Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Outpatient Center for ALS and Other Motor Neuron Diseases, Berlin, Germany (GRID:grid.6363.0) (ISNI:0000 0001 2218 4662)
2 Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany (GRID:grid.6363.0)
3 Center for ALS and Other Motor Neuron Disorders, Department of Neurology, Alfried Krupp Krankenhaus, Essen, Germany (GRID:grid.476313.4)
4 Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil, Center for ALS and Other Motor Neuron Disorders, Bochum, Germany (GRID:grid.412471.5) (ISNI:0000 0004 0551 2937)
5 Jena University Hospital, Hans Berger Department of Neurology, Jena, Germany (GRID:grid.275559.9) (ISNI:0000 0000 8517 6224)
6 University of Lübeck, Precision Neurology, Lübeck, Germany (GRID:grid.4562.5) (ISNI:0000 0001 0057 2672)
7 Universitätsmedizin Göttingen, Department of Neurology, Göttingen, Germany (GRID:grid.411984.1) (ISNI:0000 0001 0482 5331)
8 Universitätsklinikum Bonn—Klinik Für Neurodegenerative Erkrankungen, Bonn, Germany (GRID:grid.411984.1)
9 Technische Universität Dresden, Department of Neurology, Dresden, Deutschland (GRID:grid.4488.0) (ISNI:0000 0001 2111 7257); German Centre for Neurodegenerative Diseases (DZNE), Research Site Dresden, Dresden, Germany (GRID:grid.424247.3) (ISNI:0000 0004 0438 0426)
10 Diakonissenkrankenhaus Mannheim, Department of Neurology, Mannheim, Germany (GRID:grid.424247.3)
11 Universitätsklinikum Leipzig, Department of Neurology, Leipzig, Germany (GRID:grid.411339.d) (ISNI:0000 0000 8517 9062)
12 University of Ulm, Department of Neurology, Ulm, Germany (GRID:grid.6582.9) (ISNI:0000 0004 1936 9748); Research Site Ulm, German Center for Neurodegenerative Diseases (DZNE), Ulm, Germany (GRID:grid.424247.3) (ISNI:0000 0004 0438 0426)
13 Charité—Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Outpatient Center for ALS and Other Motor Neuron Diseases, Berlin, Germany (GRID:grid.6363.0) (ISNI:0000 0001 2218 4662); Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany (GRID:grid.6363.0)