Abstract
The sudden appearance and proliferation of coronavirus disease 2019 has forced societies and governmental authorities across the world to confront the possibility of resource constraints when critical care facilities are overwhelmed by the sheer numbers of grievously ill patients. As governments and health care systems develop and update policies and guidelines regarding the allocation of resources, patients and families affected by chronic disabilities, including many neuromuscular disorders that affect children and young adults, have become alarmed at the possibility that they may be determined to have less favorable prognoses due to their underlying diagnoses and thus be assigned to lower priority groups. It is important for health care workers, policymakers, and government officials to be aware that the long-Term prognoses for children and young adults with neuromuscular disorders are often more promising than previously believed due to a better understanding of the natural history of these diseases, benefits of multidisciplinary supportive care, and novel molecular therapies that can dramatically improve the disease course. Although the realities of a global pandemic have the potential to require a shift from our usual, highly individualistic standards of care to crisis standards of care, shifting priorities should nonetheless be informed by good facts. Resource allocation guidelines with the potential to affect children and young adults with neuromuscular disorders should take into account the known trajectory of acute respiratory illness in this population and rely primarily on contemporary long-Term outcome data.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 260-265 |
| Number of pages | 6 |
| Journal | Neurology |
| Volume | 95 |
| Issue number | 6 |
| DOIs | |
| State | Published - Aug 11 2020 |
| Externally published | Yes |
Bibliographical note
Funding Information:Dr. Laventhal reports no disclosures. Dr. Graham has consulted for F. Hoffmann-La Roche AG, Biogen Inc., and Audentes Therapeutics and serves as an uncompensated board member for Cure SMA. Dr. Rasmussen has served on advisory committees for the Teva Pregnancy Registry, Solriamfetol Pregnancy Registry, and Gilenya Pregnancy Registry; has consulted for F. Hoffmann-La Roche AG; and receives grant support from the NIH and the Centers for Disease Control and Prevention. Dr. Urion has received honoraria from the American Academy of Pediatrics for contributions to AAP Grand Rounds and Elsevier for contributing chapters to Nelson's Textbook of Pediatrics. Dr. Kang has consulted for AveXis and ChromaDex; served on an advisory board for Sarepta Therapeutics; and received honoraria from the American Association for Neuromuscular and Electrodiagnostic Medicine (speaker at annual meeting), the American Academy of Neurology (speaker at annual meeting), the American Academy of Pediatrics (speaker at annual meeting), Brookes Publishing for a textbook chapter, Fondazione Telethon for serving on a grant review committee, the Institute for Clinical and Economic Review for advisory activities, the National Initiative for Cockayne Syndrome for serving on an advisory board, the NIH for serving on grant review committees, Wiley for serving as associate editor of Muscle & Nerve, and Wolters Kluwer for authoring topics for UpToDate. He receives grant support from the Centers for Disease Control and Prevention and from the Xtraordinary Joy Foundation. Go to Neurology.org/N for full disclosures.
Publisher Copyright:
© American Academy of Neurology.