Study on exercise trainers in ALS: intensive use and high satisfaction
People with amyotrophic lateral sclerosis (ALS) suffer progressive paralysis of the arms and legs. Therapeutic movement trainers provide aids that enable equipment-supported physiotherapy of the legs and arms in the home. Therapeutic movement trainers for the arms and legs offer an active or passive mode of equipment-assisted physiotherapy, depending on the severity of the paralysis.
How often are therapeutic movement trainers used and what is the subjective experience of device-based physiotherapy as well as the satisfaction with the aid among people with ALS? A scientific study supported by Ambulanzpartner explores these questions. The results of the study are so informative that they were presented at the congress of the German Society for Neurology in November 2020.
The study analyzed 106 patients with ALS (women: 64%, n=68; men: 36%, n=38) who were fitted with a therapeutic exercise trainer. The study was conducted from February 2019 to January 2020 at nine specialized ALS centers. Data collection with a structured interview was conducted through the Management and Research Platform www.ambulanzpartner.de.Menschen with amyotrophic lateral sclerosis (ALS) suffer progressive paralysis of the arms and hands. Therapeutic movement trainers provide aids that enable equipment-based physiotherapy of the legs and arms in the home. Therapeutic movement trainers for the arms and legs offer an active or passive mode of equipment-assisted physiotherapy, depending on the severity of the paralysis.
Frequency of use of the therapeutic exercise trainer
The majority of patients (60%) use the therapeutic exercise trainer at least 5 times per week. Almost 9% even receive device-based physiotherapy more than 10 times per week. Only 19% use the aid with only 1 to 2 applications per week. The exact weekly frequency of use is shown in the figure.
Figure: Weekly frequency of use of the therapeutic exercise trainer, n=104
Benefits of device-based physical therapy from the patient’s perspective.
The following picture emerges from the patients’ experiences regarding the benefits of therapeutic exercise trainers. Four treatment areas achieve particularly high agreement: improvement of general well-being (98%), reduction of the feeling of immobility, improvement of the feeling of “having accomplished something” and reduction of the feeling of “rusting” (both 97%). The two treatment goals of reducing muscle stiffness (92%) and preserving muscle strength (91%) also received high endorsement. Other important effects are shown in the following figure.
Figure: Subjective benefit of device-based physiotherapy.
Satisfaction of patients with the therapeutic exercise trainer
Satisfaction with the therapeutic movement trainer was determined by the so-called likelihood of recommendation using the Net Promotor Score (NPS): “How likely is it that you would recommend the movement trainer, to a friend (m/f) or colleague (m/f) suffering from spasticity or flaccid paresis?” The answers were given on a scale between 0 (absolutely unlikely to recommend) and 10 (highly likely to recommend) points.
The likelihood of recommendation for the therapeutic movement trainer was assessed with an NPS of +61 points (NPS scale -100 to +100, > 0 = positive evaluation). This corresponds to a very high level of satisfaction with the aid.
Figure: Net Promoter Score (NPS) on satisfaction with a therapeutic exercise trainer, n=105.
Patients with ALS use therapeutic exercise trainers intensively and are very satisfied with them
The study allows for the first time an in-depth insight into the topic of therapeutic exercise trainers for patients with ALS. The topic is controversial, especially due to the restrictive cost coverage of the care by health insurance companies. The majority of patients with ALS (60%) use the therapeutic exercise trainer with at least 5 applications per week and thus receive high-frequency device-based physiotherapy in addition to physiotherapeutic care. From the patients’ perspective, the studied subjective treatment goals of device-based physical therapy are almost universally achieved. The patients’ satisfaction with the therapeutic exercise trainer is very high (NPS: +61, an NPS > 50 is considered “excellent”).
The study clearly shows the treatment potential of therapeutic movement trainers in ALS. To date, however, the potential applications of an exercise trainer in ALS are insufficiently known and under-communicated.
In order to further develop the treatment method, it is important to find out in future studies whether an improvement of functions (e.g. by a reduction of spasticity) can also be achieved by device-supported physiotherapy. Also, how the use of therapeutic movement trainers affects the emergence and development of secondary symptoms of limb paralysis (pain, contractures, lymphedema) in ALS remains to be seen in future analyses.
Thanks for data donation
We would like to thank all the patients who participated in this exercise trainer study and donated their data for research. The research project could only succeed through their patient support and data donation.
Your contact for questions about the study:
Susanne Spittel, M.Sc.
Project Manager Medical Research
Fon: 030 81031410
The study was conducted at the following ALS centers:
- Charité – Universitätsmedizin Berlin, Ambulanz für ALS und andere Motoneuronerkrankungen
- Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil, Ambulanz für ALS und andere Motoneuronerkrankungen
- Universitätsklinikum Jena, Zentrum für neuromuskuläre und Motoneuron-Erkrankungen
- Alfried Krupp Krankenhaus Essen, Ambulanz für ALS und andere Motoneuron-Erkrankung
- Universitätsklinikum Bonn – Klinik für Neurodegenerative Erkrankungen
- Universitätsmedizin Göttingen – Ambulanz für ALS und andere Motoneuro-Erkrankungen
- Universitätsklinikum Leipzig – Ambulanz für ALS und andere Motoneuroerkrankungen
- Universitätsklinikum Dresden – Ambulanz für Motoneuronerkrankungen
- Diakonissenkrankenhaus Mannheim, Klinik Neurologie