From the Division of Neonatal-Perinatal Medicine (N.T.L.), Department of Pediatrics, University of Michigan School of Medicine and C.S. Mott Children's Hospital; Center for Bioethics and Social Sciences in Medicine (N.T.L.), University of Michigan, Ann Arbor, MI; Department of Anesthesiology (R.J.G.), Critical Care and Pain Medicine, Boston Children's Hospital and Department of Anaesthesia (R.J.G.), Harvard Medical School, Boston, MA; Department of Pediatrics (S.A.R.), University of Florida College of Medicine; Department of Epidemiology (S.A.R.), University of Florida College of Medicine and College of Public Health and Health Professions, Gainesville, FL; Department of Neurology (D.K.U.), Boston Children's Hospital and Harvard Medical School, Boston, MA; Division of Pediatric Neurology (P.B.K.), Department of Pediatrics, University of Florida College of Medicine; and Department of Neurology and Department of Molecular Genetics and Microbiology (P.B.K.), University of Florida College of Medicine, Gainesville, FL.
Neurology. 2020 Aug 11;95(6):260-265. doi: 10.1212/WNL.0000000000009936. Epub 2020 Jun 1.
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.
2019 年冠状病毒病的突然出现和迅速传播，迫使世界各地的社会和政府当局面对这样一种可能性，即重症监护病房因大量重病患者而不堪重负时，资源可能会受到限制。随着政府和医疗保健系统制定和更新有关资源分配的政策和指南，受慢性残疾影响的患者和家庭，包括许多影响儿童和年轻人的神经肌肉疾病，开始担心他们可能由于潜在的诊断而被判定预后较差，从而被分配到较低的优先群体。医疗保健工作者、政策制定者和政府官员应该意识到，由于对这些疾病的自然史有了更好的了解、多学科支持性护理的益处以及可以显著改善疾病进程的新型分子疗法，儿童和年轻人的神经肌肉疾病的长期预后往往比以前认为的更有希望。尽管全球大流行的现实有可能需要我们从通常的高度个体化的护理标准转变为危机护理标准，但优先级的转变仍应基于事实。可能影响神经肌肉疾病儿童和年轻人的资源分配指南应考虑到该人群急性呼吸道疾病的已知病程，并主要依赖于当代的长期预后数据。
