Cough assistants in ALS: study demonstrates high satisfaction and daily use
For people with amyotrophic lateral sclerosis (ALS), so-called cough assistants are available to treat a weak cough. Three benefits can be achieved with a cough assistant:
1.) A physiotherapy of the rib muscles and joints.
2.) The treatment of collapsed sections of the lungs, which are no longer filled with air, by inspiration.
3.) The removal of secretions in the respiratory tract by coughing them up.
Despite the known benefits of a cough assistant, there have been few systematic studies on symptom relief from symptoms caused by a cough assistant and on satisfaction with therapy in patients with ALS.
Figure: Advantages of treatment with a cough assistant
Study on the use of and satisfaction with a cough assist
The study analyzed 100 patients with ALS (women: 55%; men: 45%) who were treated with a cough assist device. The study was conducted from July 2018 to June 2020 at eight specialized ALS centers. Data collection with a structured interview was conducted via the management and research platform www.ambulanzpartner.de.
Frequency of use of the cough assistant
The majority of patients (46%) use the cough assistant 1 to 2 times daily. Almost 18 percent receive an application of the cough assistant 3 to 4 times daily. Thirty-six percent use the aid less than 1 time daily. The exact daily frequency of use is shown in the figure.
Figure: Daily frequency of use of the cough assistant
Benefits of the cough assistant from the patient’s point of view
The following picture of the therapeutic benefit of a cough assistant emerges from the patients’ experiences. The best possible symptom relief was achieved by 53 percent of patients. Moderate symptom relief was reported by 21 percent of patients. Slight symptom relief (11%) or no symptom relief (15%) occurred to a lesser extent.
Figure: Relief from therapy with a cough assistant. Subjective relief was recorded using the Numerical Ranking Scale: no relief (0 points), mild relief (1-3 points), moderate relief (4-6 points), best possible relief (7-10 points).
Satisfaction of patients with the cough assistant
Satisfaction with the cough assistant was determined by the so-called likelihood of recommendation using the Net Promotor Score (NPS): “How likely is it that you would recommend the Cough Assistant, to another patient or to a person having difficulty coughing effectively?” Responses were made on a scale between 0 (absolutely unlikely to recommend) and 10 (highly likely to recommend) points.
The NPS for the cough assistant showed 3 groups: Patients with a strong (50%), absent (29%), or indifferent (21%) recommendation. The likelihood of recommendation was assessed with an NPS of +21 points (NPS scale -100 to +100, > 0 = positive evaluation). This corresponds to a high level of satisfaction with the tool.
Figure: Net Promoter Score (NPS) on satisfaction with a cough assistant: How likely is it that you would recommend your cough assistant treatment to another patient or person with difficulty coughing effectively? Responses were on a nominal scale between 0 (absolutely unlikely to recommend) and 10 (highly likely to recommend) scale points
Patients with ALS use cough assistants daily and are satisfied with them
The study allows an in-depth look at the topic of cough assist devices for people with ALS and cough weakness.
The majority of patients with ALS (64%) use the cough assistant with at least 1 daily application. From the patients’ point of view, subjective symptom relief is almost consistently achieved. Patient satisfaction with the cough assistant is high (NPS: +21).
The study clearly shows the treatment potential of cough assistants for cough weakness caused by ALS. In order to further develop the treatment method, it is important to find out in future studies whether an improvement of lung functions can also be achieved by the cough assistant.
Thanks for data donation
We would like to thank all patients who participated in this 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.
Projektleiterin medizinische Forschung
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
- Alfried Krupp Krankenhaus Essen, Klinik für Pneumologie, Gastroenterologie und Innere Medizin
- Klinikum Ernst von Bergmann Bad Belzig GmbH, Pneumologisches Beatmungszentrum
- Medizinische Hochschule Hannover, Ambulanz für ALS
- Diakonissenkrankenhaus Mannheim, Ambulanz für ALS