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在 COVID-19 大流行期间对杜氏肌营养不良症、贝克肌营养不良症和其他肌营养不良症患者的护理。

The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID-19 pandemic.

机构信息

Division of Neurology, Department of Pediatrics, University of Arkansas for Medical Sciences, Arkansas Children's Hospital, Little Rock, Arkansas.

Center for Genetic Muscle Disorders, Kennedy Krieger Institute and Departments of Neurology and Neuroscience, Johns Hopkins School of Medicine, Baltimore, Maryland.

出版信息

Muscle Nerve. 2020 Jul;62(1):41-45. doi: 10.1002/mus.26902. Epub 2020 May 5.

DOI:10.1002/mus.26902
PMID:32329920
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7264600/
Abstract

The coronavirus disease 2019 (COVID-19) pandemic has resulted in the reorganization of health-care settings affecting clinical care delivery to patients with Duchenne and Becker muscular dystrophy (DBMD) as well as other inherited muscular dystrophies. The magnitude of the impact of this public health emergency on the care of patients with DBMD is unclear as they are suspected of having an increased risk for severe manifestations of COVID-19. In this article, the authors discuss their consensus recommendations pertaining to care of these patients during the pandemic. We address issues surrounding corticosteroid and exon-skipping treatments, cardiac medications, hydroxychloroquine use, emergency/respiratory care, rehabilitation management, and the conduct of clinical trials. We highlight the importance of collaborative treatment decisions between the patient, family, and health-care provider, considering any geographic or institution-specific policies and precautions for COVID-19. We advocate for continuing multidisciplinary care for these patients using telehealth.

摘要

2019 年冠状病毒病(COVID-19)大流行导致医疗环境发生重组,影响了对杜氏肌营养不良症(DBMD)和其他遗传性肌营养不良症患者的临床治疗。由于这些患者疑似存在 COVID-19 严重表现的风险增加,因此本次公共卫生紧急事件对 DBMD 患者护理的影响程度尚不清楚。在本文中,作者讨论了他们在大流行期间对这些患者护理的共识建议。我们探讨了与皮质类固醇和外显子跳跃治疗、心脏药物、羟氯喹使用、急诊/呼吸护理、康复管理以及临床试验进行相关的问题。我们强调了患者、家庭和医疗保健提供者之间进行协作治疗决策的重要性,要考虑任何地理或机构特定的 COVID-19 政策和预防措施。我们主张使用远程医疗为这些患者提供多学科的连续护理。

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