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


Journal

Scientific reports
ISSN: 2045-2322
Titre abrégé: Sci Rep
Pays: England
ID NLM: 101563288

Informations de publication

Date de publication:
10 06 2022
Historique:
received: 12 01 2022
accepted: 27 05 2022
entrez: 10 6 2022
pubmed: 11 6 2022
medline: 15 6 2022
Statut: epublish

Résumé

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.

Identifiants

pubmed: 35688956
doi: 10.1038/s41598-022-13761-6
pii: 10.1038/s41598-022-13761-6
pmc: PMC9187150
doi:

Types de publication

Journal Article Multicenter Study Observational Study Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

9657

Informations de copyright

© 2022. The Author(s).

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Auteurs

André Maier (A)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany. andre.maier@charite.de.

Marcel Gaudlitz (M)

Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.

Torsten Grehl (T)

Department of Neurology, Alfried Krupp Krankenhaus, Center for ALS and Other Motor Neuron Disorders, Essen, Germany.

Ute Weyen (U)

Center for ALS and Other Motor Neuron Disorders, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil, Bochum, Germany.

Robert Steinbach (R)

Hans Berger Department of Neurology, Jena University Hospital, Jena, Germany.

Julian Grosskreutz (J)

Precision Neurology, University of Lübeck, Lübeck, Germany.

Annekathrin Rödiger (A)

Hans Berger Department of Neurology, Jena University Hospital, Jena, Germany.

Jan Christoph Koch (JC)

Department of Neurology, Universitätsmedizin Göttingen, Göttingen, Germany.

Teresa Lengenfeld (T)

Department of Neurology, Universitätsmedizin Göttingen, Göttingen, Germany.

Patrick Weydt (P)

Universitätsklinikum Bonn-Klinik Für Neurodegenerative Erkrankungen, Bonn, Germany.

René Günther (R)

Department of Neurology, Technische Universität Dresden, Dresden, Deutschland.
Research Site Dresden, German Centre for Neurodegenerative Diseases (DZNE), Dresden, Germany.

Joachim Wolf (J)

Department of Neurology, Diakonissenkrankenhaus Mannheim, Mannheim, Germany.

Petra Baum (P)

Department of Neurology, Universitätsklinikum Leipzig, Leipzig, Germany.

Moritz Metelmann (M)

Department of Neurology, Universitätsklinikum Leipzig, Leipzig, Germany.

Johannes Dorst (J)

Department of Neurology, University of Ulm, Ulm, Germany.
German Center for Neurodegenerative Diseases (DZNE), Research Site Ulm, Ulm, Germany.

Albert C Ludolph (AC)

Department of Neurology, University of Ulm, Ulm, Germany.
German Center for Neurodegenerative Diseases (DZNE), Research Site Ulm, Ulm, Germany.

Dagmar Kettemann (D)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.

Jenny Norden (J)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.

Ruhan Yasemin Koc (RY)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.

Bertram Walter (B)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.

Barbara Hildebrandt (B)

Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.

Christoph Münch (C)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.
Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.

Thomas Meyer (T)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.
Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.

Susanne Spittel (S)

Outpatient Center for ALS and Other Motor Neuron Diseases, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin and Berlin Institute of Health, Augustenburger Platz 1, 13353, Berlin, Germany.
Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.

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