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. 2021 Apr;133(7-8):344-350.
doi: 10.1007/s00508-020-01786-8. Epub 2020 Dec 21.

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

Agnieszka Sobierajska-Rek  1 , Łukasz Mański  2 , Joanna Jabłońska-Brudło  2 , Karolina Śledzińska  3 , Aleksandra Ucińska  4 , Jolanta Wierzba  3
Affiliations

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

Agnieszka Sobierajska-Rek et al. Wien Klin Wochenschr. 2021 Apr.

Abstract

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.

Keywords: Digital rehabilitation; Home-based exercise; Motor assessment; Neuromuscular disease; Physical therapy.

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Conflict of interest statement

A. Sobierajska-Rek, Ł. Mański, J. Jabłońska-Brudło, K. Śledzińska, A. Ucińska, and J. Wierzba declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Flowchart showing study interventions with numbers of participants
Fig. 2
Fig. 2
Bar chart showing telerehabilitation expectations. ALONE patient performs all exercises by himself, AL + AS patient performs some of exercises alone and some with caregiver’s assistance, ASSISTANCE patient exercises with caregiver’s assistance, RESPIRATORY respiratory exercises, WHOLE BODY whole body exercises including stretching, R + W respiratory and whole body exercises including stretching
See this image and copyright information in PMC

References

    1. Mosqueira M, Zeiger U, Förderer M, Brinkmeier H, Fink R. Cardiac and respiratory dysfunction in Duchenne muscular dystrophy and the role of second messengers. Med Res Rev. 2013;33:1174–1213. doi: 10.1002/med.21279. - DOI - PubMed
    1. World Muscle Society. Covid-19 and people with neuromuscular disorders: World Muscle Society position and advice. 2020. https://www.worldmusclesociety.org/news/view/150. Accessed 20 May 2020.
    1. Veerapandiyan A, Wagner KR, Apkon S, et al. The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID-19 pandemic. Muscle Nerve. 2020;62(1):41–45. doi: 10.1002/mus.26902. - DOI - PMC - PubMed
    1. Birnkrant DJ, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17(3):251–267. doi: 10.1016/S1474-4422(18)30024-3. - DOI - PMC - PubMed
    1. Usher K, Bhullar N, Jackson D. Life in the pandemic: social isolation and mental health. J Clin Nurs. 2020;29(15-16):2756–2757. doi: 10.1111/jocn.15290. - DOI - PubMed