Consensus Statement on the Management of Duchenne Muscular Dystrophy in Saudi Arabia During the Coronavirus Disease 2019 Pandemic

Abstract

Background: The coronavirus disease 2019 (COVID-19) pandemic has caused overwhelming challenges in healthcare worldwide. During such an outbreak, some needs of high-risk groups who require regular follow-ups and long-term management are not met. The vulnerable populations include patients with Duchenne muscular dystrophy (DMD). Duchenne muscular dystrophy is characterized by respiratory complications caused by muscle weakness. Hence, patients with this condition are at high risk of severe diseases including COVID-19.Methods: To standardize care and provide optimal treatment to DMD patients in Saudi Arabia during the COVID-19 pandemic, a panel of experts including neurologists and pediatricians consolidated recommendations for healthcare professionals and caregivers.Results: During this pandemic, substituting unnecessary clinic visits with virtual clinic services was highly recommended, if possible, without compromising clinical outcomes. Duchenne muscular dystrophy patients with respiratory complications should be closely monitored, and those with cardiovascular complications must continue taking angiotensin-converting enzyme inhibitors or angiotensin receptor blockers. Moreover, individualized home-based rehabilitation management was preferred. Glucocorticoid and new gene correction therapies should be continued. However, new gene correction therapy must be post-poned in newly diagnosed patients. A multidisciplinary decision was required before the initiation of hydroxychloroquine based on the COVID-19 treatment protocol.Conclusion: COVID-19 has caused challenges and transformed access to health care. However, these limitations have provided opportunities for the health care system to adapt. Further, telemedicine has become a reliable platform for follow-up appointments that should be conducted by a multidisciplinary team including physicians, dieticians, and physical therapists.

Exploration of implementation, financial and technical considerations within allied health professional (AHP) telehealth consultation guidance: a scoping review including UK AHP professional bodies’ guidance

“…19 23 26 32 33 Eighteen articles/guidelines reported that the decision should consider individual patient’s characteristics to provide individualised care. 34 35 Details on patient’s eligibility criteria for telehealth mentioned in the articles/guidelines included in the review are provided in online supplemental file 3 .…”

Morbidity, Clinical Course and Vaccination against SARS-CoV-2 Virus in Patients with Duchenne Muscular Dystrophy: A Patient Reported Survey

“…Current WHO recommendations highlight the role of telemedicine [ 19 ]. In Saudi Arabia, Bamaga et al advised DMD patients to proceed with virtual clinic visits, if possible, to avoid unnecessary contact with other patients who are probably infected [ 20 ]. In our previous study, we presented the possibilities and benefits of home e-monitoring of the pulmonary function in DMD patients [ 21 ].…”

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“…Telemedicine and telerehabilitation demonstrate a promising alternative strategy, but this seems to be potentially compromised and unexplored to a great extent in developing countries. Many patients with neuromuscular disease rely heavily on caregiver support throughout their lifetime and thus maintaining the health of their primary caregivers is also a significant consideration in the health and well-being of the patients [23,24].…”