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

doi:10.1007/s00508-020-01786-8

Cited by 37 publications

(37 citation statements)

References 25 publications

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“…In that study, the authors established an online program of rehabilitation based on virtual workshops, videos with exercise instructions with the participation of multidisciplinary team, and/or individual online consultations. The possibility to continue online their rehabilitation was positively received by patients and caregivers, with high level of usage [ 29 ]. By enhancing the engagement of NM patients and by developing a specific model of telerehabilitation for NM care, the goal is to improve the physical and mental health of our patients, decreasing trips to the hospital and amount of pharmacological therapies.…”

Section: Digital Therapeuticsmentioning

confidence: 99%

How to manage with telemedicine people with neuromuscular diseases?

et al. 2021

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Introduction COVID-19 pandemic radically transformed our daily clinical practice, raising the need not to lose close contact with patients without being able to see them face-to-face. These issues are even more felt and evident in fragile patients, as those affected by neuromuscular disease. An important help came from new digital technologies that allow clinicians to remotely monitor health status and any deterioration of chronically ill patients. Methods In this mini-review, an initiative of the “Digital Technologies, Web and Social Media Study Group” of the Italian Society of Neurology, we propose to analyze the approach to neuromuscular patients by looking over raising evidence on the main cornerstones of Telemedicine (TM): clinician-patient interaction, remote clinical assessment, remote monitoring, and digital therapeutics. In particular, we explored the strategies developed by researchers and their impact on the physical and emotional status of the patients, with particular focusing on their adherence to the program of virtual monitoring. Results TM plays an important role in each of four stages of approach to neuromuscular disease, having demonstrated validity in keep close clinical patient interaction, clinical assessment, remote monitoring, and telerehabilitation. Nevertheless, there is no remote alternative to electrophysiological testing neither validate tools to assess disability. Conclusion The role of TM in neuromuscular care is yet underestimated but is crucial, beyond the pandemic era. Further development of TM is advisable, through making specific apps, remotely controlled by clinicians, and making more engaging clinicians-patients interaction. Last, it is necessary to ensure adequate internet access to everyone.

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Section: Digital Therapeuticsmentioning

confidence: 99%

How to manage with telemedicine people with neuromuscular diseases?

et al. 2021

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“…The most important finding is the fact that the telerehabilitation is acceptable by patients with DMD and caregivers, and can be performed using video techniques as instructions. This fact is especially important during the pandemic period, as our previous study showed, in which almost all patients stopped institutional physical therapy due to the national recommendations of social isolation, and the majority of them continued physical therapy at home [9]. Limited attendance for institutional rehabilitation indicates the urgent need to implement well-designed telerehabilitation programs that meet the specific needs of DMD patients.…”

Section: Discussionmentioning

confidence: 96%

“…It is well documented that rehabilitation with glucocorticosteroid treatment slows down the disease progress; it prolongs ambulation, delays respiratory function deterioration, and decreases the risk of severe scoliosis. Traditional rehabilitation consisting of stretching, positioning, exercises improving strength and endurance, postural re-education, and respiratory management is a key intervention for maintaining and preserving optimal function and participation [9]. Constant direct treatment implemented by physical therapists and occupational therapists should be tailored to the patient's age, individual needs, and stage of disease [10].…”

Section: Introductionmentioning

confidence: 99%

“…Due to the fact that DMD patients are at risk of severe complications from COVID-19 [11], the multidisciplinary healthcare team is seeking the safest way to provide constant care and treatment at the highest possible level. The innovative digital form of physical therapy, which is easily available, free of charge, and adjustable, can support the daily routine of home training during the time of social distancing [9].…”

Section: Introductionmentioning

confidence: 99%

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Respiratory Telerehabilitation of Boys and Young Men with Duchenne Muscular Dystrophy in the COVID-19 Pandemic

Sobierajska-Rek

Mański

Jabłońska-Brudło

et al. 2021

IJERPH

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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.

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“…Due to the fact that DMD patients are at risk of severe course of COVID-19 [5] the multidisciplinary healthcare team is seeking the safest way to provide constant care and treatment on the highest possible level. The innovative digital form of physical therapy which is easily available, free of charge and adjustable can support the daily routine of home training in the time of social distancing [6].…”

Section: Introductionmentioning

confidence: 99%

Do Our Patients Really Need Telerehabilitation? Digital Physical Therapy for Boys with Duchenne Muscular Dystrophy in the COVID-19 Pandemic

Sobierajska-Rek

Mański

Jabłońska-Brudło

et al. 2022

The 3rd International Electronic Conference on Environmental Research and Public Health—Public Health Issues in the C

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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 -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 on-line survey evaluating the quality of the instructions, its acceptance and understanding. Results: The survey was filled in by 31 (20.4%) 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 replied for invitation for individual on-line session. Conclusions: Findings from the study show that respiratory telerehabilitation may be implemented in DMD patients, however the interest of digital rehabilitation among caregivers of DMD boys in Poland is low. The reason of this situation requires further research.

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

Cited by 37 publications

References 25 publications

How to manage with telemedicine people with neuromuscular diseases?

How to manage with telemedicine people with neuromuscular diseases?

Respiratory Telerehabilitation of Boys and Young Men with Duchenne Muscular Dystrophy in the COVID-19 Pandemic

Do Our Patients Really Need Telerehabilitation? Digital Physical Therapy for Boys with Duchenne Muscular Dystrophy in the COVID-19 Pandemic

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