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沙特阿拉伯2019冠状病毒病大流行期间杜氏肌营养不良症管理的共识声明。

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

作者信息

Bamaga Ahmed K, Alghamdi Fouad, Alshaikh Nahla, Altwaijri Waleed, Bashiri Fahad A, Hundallah Khalid, Abukhaled Musaad, Muthaffar Osama Y, Al-Mehmadi Sameer, Jamaly Tahani Ahmed, Al-Muhaizea Mohammad A, Al-Saman Abdulaziz

机构信息

Neurology Division, Pediatric Department, Faculty of Medicine, King Abdulaziz University Hospital, King Abdulaziz University, Jeddah, Saudi Arabia.

Pediatric Department, King Faisal Specialist Hospital and Research Center, Jeddah, Saudi Arabia.

出版信息

Front Pediatr. 2021 Feb 17;9:629549. doi: 10.3389/fped.2021.629549. eCollection 2021.

Abstract

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. 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. 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. 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.

摘要

2019年冠状病毒病(COVID-19)大流行给全球医疗保健带来了巨大挑战。在这样的疫情爆发期间,一些需要定期随访和长期管理的高危人群的需求未得到满足。弱势群体包括杜氏肌营养不良症(DMD)患者。杜氏肌营养不良症的特征是由肌肉无力引起的呼吸系统并发症。因此,患有这种疾病的患者患包括COVID-19在内的严重疾病的风险很高。为了在COVID-19大流行期间规范沙特阿拉伯DMD患者的护理并提供最佳治疗,一个由神经科医生和儿科医生组成的专家小组为医疗保健专业人员和护理人员整合了建议。在这次大流行期间,强烈建议尽可能用虚拟诊所服务替代不必要的门诊就诊,同时不影响临床结果。患有呼吸系统并发症的杜氏肌营养不良症患者应密切监测,患有心血管并发症的患者必须继续服用血管紧张素转换酶抑制剂或血管紧张素受体阻滞剂。此外,首选个性化的家庭康复管理。糖皮质激素和新的基因矫正疗法应继续使用。然而,新诊断患者的新基因矫正疗法必须推迟。根据COVID-19治疗方案,在开始使用羟氯喹之前需要进行多学科决策。COVID-19带来了挑战并改变了医疗保健的获取方式。然而,这些限制为医疗保健系统提供了适应的机会。此外,远程医疗已成为一个可靠的随访预约平台,应由包括医生、营养师和物理治疗师在内的多学科团队进行。

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