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Do our patients really need telerehabilitation? Digital physical therapy of boys with Duchenne muscular dystrophy in the COVID-19 pandemic.
* 1 , 2 , 3 , 4
1  Department of Rehabilitation Medicine, Faculty of Health Sciences with Institute of Maritime and Tropical Medicine, Medical University of Gdansk, Gdansk, Poland
2  Department of Physical Therapy, Faculty of Health Sciences with Institute of Maritime and Tropical Medicine, Medical University of Gdansk, Gdansk, Poland;
3  Department of Rehabilitation Medicine, Faculty of Health Sciences with Institute of Maritime and Tropical Medicine, Medical University of Gdansk, Gdansk, Poland;
4  Department of Internal and Pediatric Nursing, Faculty of Health Sciences with Institute of Maritime and Tropical Medicine, Medical University of Gdansk, Gdansk, Poland

Abstract:

Introduction: The COVID-19 pandemic forced reorganization of the multidisciplinary healthcare system for Duchenne muscular dystrophy. Digital solutions seem to be optimal way for providing rehabilitation for 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 on-line conference ‘DMD - lets be together’for polish families with DMD. During the physical therapy panel we had showed the video with the instructions of respiratory exercises: glossopharyngeal breathing, positive inspiratory pressure and positive expiratory pressure, additionally we had explained the need of such training in this group. The video is still available for all participants online. After the conference all participants (n=152) were asked for filling the on-line survey evaluating the quality of the instructions, its feasibility and understanding. Results: The survey was filled by 31 (59.6%) participants, mean age of patients 13.8, 19 (61.3%) were ambulant. The video was displayed 127 times. The overall mean rating of the session was 4.77/5, intelligibility 4.74/5, 14 (45.2%) patients declared that they had performed the exercises by themselves or with caregiver’s assistance, all caregivers declared that it is possible to perform proposed exercises few times a week or daily, only two respondents responded for invitation for individual on-line session. Conclusions: Findings from the study show that respiratory telerehabilitation in DMD patients is feasible, however the interest of digital rehabilitation among caregivers of DMD boys in Poland is low. The reason of this situation requires further research.

Keywords: DMD; children; telerehabilitation
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