Experts Offer Advice for Duchenne, Becker Patients Amid COVID-19 Pandemic
People with Duchenne and Becker muscular dystrophy should not forego their routine health assessments during the COVID-19 pandemic, but are encouraged to transition their care to telemedicine and to medical tests performed at home to minimize risk.
Those are among the consensus recommendations provided by neuromuscular specialists to help these patients and their caregivers deal with the challenges of the latest coronavirus outbreak.
The experts’ statement, “The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID-19 pandemic,” was published in the journal Muscle & Nerve.
People with Duchenne and Becker are believed to be at greater risk for severe infections caused by SARS-CoV-2 (the new coronavirus), not only because their disease progressively causes respiratory failure and heart problems, but also because they take immunosuppressive steroid medications.
To avoid such infections, these patients should practice social distancing and avoid contact with others outside their household. But the real impact of COVID-19 in the management of this patient group is largely unknown.
Neuromuscular disease specialists in the U.S. gathered to provide recommendations for the care of patients with Duchenne and Becker muscular dystrophy during this public health emergency.
The consensus statement advises patients to follow local, state, and federal guidelines, and maintain strict social distancing practices, avoiding public gatherings and limiting time in stores.
Patients should continue their current medications (such as corticosteroids), but their neurologist or neuromuscular specialist should be notified so they cn adjust doses if they become ill. Those on angiotensin-converting enzyme inhibitors or angiotensin receptor blockers to prevent or treat cardiac disease also should continue on these therapies despite the interplay between SARS-CoV-2 and an enzyme that breaks down angiotensin II.
Home infusions should be considered — with appropriate precautions — for those receiving exon-skipping therapies, which include Exondys 51 (eteplirsen), Vyondys 53 (golodirsen) and the yet-to-be-approved viltolarsen.
Periodic assessments should continue, the experts said, but conducted through telemedicine and home-based diagnostic testing if possible. New or ongoing mental health and behavioral concerns also should be followed through telehealth.
In they develop COVID-19 symptoms and require assessment in an emergency department, patients should bring their ventilators, masks, and cough assist devices for continued use, but are advised to use full-face masks or cuffed tracheostomies to prevent cross-contamination of staff, equipment, other patients.
The specialists advise against the use of hydroxychloroquine in these patients, given the significant and potentially harmful adverse effects of this medication. Recently, the U.S. Food and Drug Administration issued a statement cautioning against the use of hydroxychloroquine or chloroquine for any patient with COVID-19 outside of a hospital setting or a clinical trial due to the risk of heart rhythm problems.
Continued rehabilitation approaches, including physical therapy, occupational therapy, or speech therapy, should be assessed case-by-case. In some cases, patients may consider telerehabilitation services.
Regarding current clinical trials, the main recommendation is to ensure the safety of patients and staff, with transitions to remote visits when possible.
“We strongly recommend that health-care providers practice strict adherence to established policies pertaining to the COVID-19 response and work closely with local and institutional authorities to ensure timely and uninterrupted care for patients with [Duchenne and Becker MD],” the researchers wrote.