慢性遗传疾病面临的挑战：新冠疫情带来的启示。
Challenges in Chronic Genetic Disorders: Lessons From the COVID-19 Pandemic.
机构信息
Institute of Medical Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi, India.
出版信息
Indian Pediatr. 2021 Apr 15;58(4):391-392. doi: 10.1007/s13312-021-2202-x.
Abstract
To examine the impact of the COVID-19 pandemic, we interviewed 26 patients with lysosomal storage disorders receiving enzyme replacement therapy. 20 (77 %) had significant interruption in their treatment, with an average of 8 (range 2-28) missed doses. Alternate methods of delivering uninterrupted care including home therapy were used. Vulnerable patients with chronic genetic disorders require organization for their multidisciplinary needs of care.
摘要
为了研究 COVID-19 大流行的影响，我们采访了 26 名接受酶替代疗法的溶酶体贮积症患者。20 名（77%）的治疗出现了明显中断，平均漏用 8 剂（范围 2-28 剂）。采用了包括家庭治疗在内的其他方法来提供不间断的护理。患有慢性遗传性疾病的脆弱患者需要组织起来，以满足他们多学科的护理需求。
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