When the coronavirus disease 2019 (COVID-19) pandemic first swept across the world in 2020, most countries turned to one of the most ancient tools for infection control: quarantine. This contrasted with the use of one of the most modern tools for communication: digital technology. As life, work, and leisure moved online, we all learned just how much of our lives can be conducted digitally 2 decades into this new century.
Medicine, too, moved online—at least, part of it did. The COVID-19 pandemic accelerated the boom in telemedicine; all of a sudden, it dawned on both doctor and patient that some consultations need not be conducted in person after all. In fact, most nonemergency consultations can be conducted via telemedicine; even if a patient is experiencing a medical emergency unknowingly, the doctor could then immediately refer the patient to the nearest emergency department.
Telemedicine became widespread during the COVID-19 pandemic out of necessity – with severe travel restrictions in place, some patients simply could not physically make it to their local clinics. A few medical conditions can wait; most cannot. However, what was born out of necessity may become so integral to our healthcare system that it ends up staying out of necessity as well, even when the pandemic is over.
A group of Polish researchers set out to investigate whether it is feasible to conduct rehabilitation services through telemedicine for patients with Duchenne muscular dystrophy (DMD) and published their findings in The Central European Journal of Medicine (Wiener Klinische Wochenschrift). We will be looking at their study in this article.
DMD and Rehabilitation
DMD, the authors of the study wrote, is an X-linked disease that causes “the gradual loss of motor function, gait abnormalities, progressive respiratory failure, and cardiomyopathy.” Given that features of respiratory failure are present in DMD, it is conceivable that DMD predisposes a patient to serious illness if the patient contracts COVID-19. However, at the time of this study’s publishing, there was no evidence of a higher incidence of COVID-19 in patients with DMD.
A mainstay of DMD treatment is rehabilitation combined with glucocorticosteroid treatment. This is a treatment regime that slows down disease progression, helping patients to maintain their ability to ambulate and breathe normally while also preventing deformations caused by contractures and scoliosis.
Read more about DMD therapies
However, rehabilitation – physical, speech, and occupational – must be carried out consistently for this treatment approach to produce any long-term clinical benefits. In some countries, rehabilitation programs for patients with DMD are available in home, school, and outpatient settings. In 2020, the COVID-19 pandemic abruptly disrupted many routine healthcare services, including DMD rehabilitation programs. However, stopping DMD rehabilitation programs altogether until the pandemic ends is not feasible either – they are quite literally a matter of life and death.
The DMD Study
The authors of this study set up an online rehabilitation program for a group of young patients with DMD to study the efficacy of telemedicine as a means of delivering rehabilitation services. Sixty-nine boys with DMD were recruited for the study, with a mean age of 9.41 years. This study was carried out by the Rare Disease Center in the Medical University of Gdańsk, Poland.
First, the participants and their caregivers were asked to fill in a questionnaire containing questions regarding their treatment regime before COVID-19, additional burdens experienced during COVID-19, and their expectations during the telerehabilitation project.
Read more about DMD etiology
Next, the patients were divided into 2 groups: ambulant and nonambulant. Ambulant patients were defined as possessing the ability to walk independently, with or without leg braces. Online workshops were then prepared to cater to these 2 groups of patients. The workshops were all presented by a physiotherapist with the use of a manikin and lasted 60 minutes each. In addition, patients and their caregivers were asked to perform 6 motor assessment tasks and fill in the results on an app once a month.
Sixteen boys participated in the online workshops; 14 boys (29.7% response rate) were from the ambulant group and 2 boys (9.0% response rate) were from the nonambulant group. Videos of these online workshops that were made available online were viewed 132 times in a month, and a sample can be viewed here.
The online workshops for both groups of patients were divided into 3 parts. The first involved respiratory and chest physiotherapy; the second consisted of stretching and autostretching; the third focused on full-body exercises, such as exercises conducted in the prone and supine positions as well as side lying.
This study demonstrated that telerehabilitation for DMD is a feasible option, especially when in-person rehabilitation is not possible. Workshops presented online could be done in a systematic fashion, covering different areas of rehabilitation. The online workshops could also be targeted according to a patient’s disease severity.
A limitation of this study is the lack of evaluation of the perceived effectiveness of telerehabilitation from the participants. There were no data presented on how the patients felt about telerehabilitation compared to in-person rehabilitation. This study simply establishes that home-based rehabilitation can be performed using telemedicine with the help of a professional physiotherapist and the participation of patients and their caregivers.
This is the first study to describe remote rehabilitation programs for patients with DMD during the COVID-19 pandemic. It presents an invitation of sorts to forward-thinking physiotherapists to build upon this blueprint and possibly incorporate telerehabilitation into standard care in the future. As stated in the introduction, what was born out of necessity might end up staying out of necessity. Telerehabilitation in the context of DMD care might just end up with a shelf life far exceeding the course of the COVID-19 pandemic.
Sobierajska-Rek A, Mański Ł, Jabłońska-Brudło J, Śledzińska K, Ucińska A, Wierzba J. Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic. Wien Klin Wochenschr. 2021;133(7-8):344-350. doi:10.1007/s00508-020-01786-8
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