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Erschienen in: Wiener klinische Wochenschrift 7-8/2021

21.12.2020 | original article

Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic

verfasst von: PT, PhD Agnieszka Sobierajska-Rek, PT, Msc Łukasz Mański, MD, PhD Joanna Jabłońska-Brudło, MD, PhD Karolina Śledzińska, MD Aleksandra Ucińska, MD Professor Jolanta Wierzba

Erschienen in: Wiener klinische Wochenschrift | Ausgabe 7-8/2021

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Summary

Background

Duchenne muscular dystrophy is a genetic disease characterized by gradual loss of motor function, respiratory failure and cardiomyopathy. During the time of the global coronavirus pandemic, maintenance of social distancing and self-isolation might complicate regular multidisciplinary care of patients with Duchenne muscular dystrophy but on the other hand may lead to new medical care telehealth solutions. The aim of the study was to investigate patients’ situation regarding rehabilitation in the pandemic, to establish an online rehabilitation program and motor assessment and to determine the needs of telerehabilitation in this group.

Methods

The project involved 69 boys with Duchenne muscular dystrophy. The rehabilitation program was presented during online workshops for patients and caregivers. The same program was recorded on video and published in the internet. The online motor assessment tool consisted of six motor tests, caregivers were asked to perform the tasks and share a photograph of the patient’s posture using a designed app.

Results

In the nonambulant group the emphasis was placed on chest physiotherapy, stretching of upper extremities, positioning and wheelchair ergonomics. The program for the ambulant group focused on lower extremities stretching and full body exercises. Response rate for the workshops for ambulant patients was 29.7%, and only 9.0% for nonambulant patients. Videos showing exercises were displayed 132 times within a month.

Conclusion

With the physiotherapist guidance (online communication or video) patients with caregivers’ help can continue home based rehabilitation. Online videos/instructions/video guidelines are more acceptable by parents/caregivers of patients with Duchenne muscular dystrophy than live workshops.

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Metadaten
Titel
Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
verfasst von
PT, PhD Agnieszka Sobierajska-Rek
PT, Msc Łukasz Mański
MD, PhD Joanna Jabłońska-Brudło
MD, PhD Karolina Śledzińska
MD Aleksandra Ucińska
MD Professor Jolanta Wierzba
Publikationsdatum
21.12.2020
Verlag
Springer Vienna
Erschienen in
Wiener klinische Wochenschrift / Ausgabe 7-8/2021
Print ISSN: 0043-5325
Elektronische ISSN: 1613-7671
DOI
https://doi.org/10.1007/s00508-020-01786-8