ABSTRACT
The COVID-19 pandemic forced the reorganization of the multidisciplinary healthcare system for Duchenne muscular dystrophy (DMD). Digital solutions seemed to be an optimal way for providing rehabilitation during this time. The aim of our study was to investigate whether it is possible to conduct respiratory physical therapy with the use of telerehabilitation methods in boys with Duchenne muscular dystrophy. Methods: The study was conducted during the online conference 'DMD-Let's be together' for Polish families with DMD. During the physical therapy panel, we showed the video with the instructions of respiratory exercises: glossopharyngeal breathing, positive inspiratory pressure, and positive expiratory pressure. All participants (n = 152) were asked to fill in the online survey evaluating the quality of the instructions, its acceptance, and understanding. Results: The survey was filled in by 31 (20.4%) participants;the mean age of the patients was 13.8, and 19 (61.3%) were ambulant. The video was displayed 127 times. The overall mean rating of the session was 4.77/5, and intelligibility was rated 4.74/5. Fourteen (45.2%) patients declared that they had performed the exercises by themselves or with their caregiver's assistance;all caregivers declared that it is possible to perform the proposed exercises a few times a week or daily. Only two respondents replied to the invitation for an individual online session. Conclusions: The findings from the study show that respiratory telerehabilitation may be implemented in DMD patients;however, the interest in digital rehabilitation among caregivers of DMD boys in Poland is low. The reason for this situation requires further research.
ABSTRACT
BACKGROUND: The COVID-19 pandemic forced reorganization of the multidisciplinary healthcare system for Duchenne muscular dystrophy. Digital solutions seem to be optimal for providing rehabilitation at this time. The aim of this study was to investigate whether it is possible to conduct respiratory physical therapy with the use of telerehabilitation in Duchenne muscular dystrophy. METHODS: The study was conducted during an online conference for families with DMD. During the physical therapy panel we showed the video with the instructions of respiratory exercises. All participants (n = 152) were asked to fill in the online survey evaluating the quality, acceptance, and understanding of the instructions. RESULTS: The survey was filled in by 45 (29.6%) participants. The mean rating of satisfaction was 4.70/5, and for intelligibility was 4.78/5. Thirty-seven (82.2%) patients declared that they had performed the exercises, all caregivers declared that it was possible to perform the proposed exercises a few times a week or daily, and only two respondents replied to invitations to individual online sessions. CONCLUSIONS: Findings from the study show that respiratory telerehabilitation may be implemented for DMD patients; however, the interest in digital rehabilitation among caregivers of DMD boys in Poland is low. The reasons for this situation require further research.
Subject(s)
COVID-19 , Muscular Dystrophy, Duchenne , Telerehabilitation , Humans , Male , Pandemics , Poland , SARS-CoV-2ABSTRACT
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.