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

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 car...

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Autores principales: Sobierajska-Rek, Agnieszka, Mański, Łukasz, Jabłońska-Brudło, Joanna, Śledzińska, Karolina, Ucińska, Aleksandra, Wierzba, Jolanta
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Vienna 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7750780/
https://www.ncbi.nlm.nih.gov/pubmed/33346889
http://dx.doi.org/10.1007/s00508-020-01786-8
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author Sobierajska-Rek, Agnieszka
Mański, Łukasz
Jabłońska-Brudło, Joanna
Śledzińska, Karolina
Ucińska, Aleksandra
Wierzba, Jolanta
author_facet Sobierajska-Rek, Agnieszka
Mański, Łukasz
Jabłońska-Brudło, Joanna
Śledzińska, Karolina
Ucińska, Aleksandra
Wierzba, Jolanta
author_sort Sobierajska-Rek, Agnieszka
collection PubMed
description 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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spelling pubmed-77507802020-12-21 Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic Sobierajska-Rek, Agnieszka Mański, Łukasz Jabłońska-Brudło, Joanna Śledzińska, Karolina Ucińska, Aleksandra Wierzba, Jolanta Wien Klin Wochenschr Original Article 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. Springer Vienna 2020-12-21 2021 /pmc/articles/PMC7750780/ /pubmed/33346889 http://dx.doi.org/10.1007/s00508-020-01786-8 Text en © Springer-Verlag GmbH Austria, part of Springer Nature 2020 This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.
spellingShingle Original Article
Sobierajska-Rek, Agnieszka
Mański, Łukasz
Jabłońska-Brudło, Joanna
Śledzińska, Karolina
Ucińska, Aleksandra
Wierzba, Jolanta
Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
title Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
title_full Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
title_fullStr Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
title_full_unstemmed Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
title_short Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic
title_sort establishing a telerehabilitation program for patients with duchenne muscular dystrophy in the covid-19 pandemic
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7750780/
https://www.ncbi.nlm.nih.gov/pubmed/33346889
http://dx.doi.org/10.1007/s00508-020-01786-8
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