新型冠状病毒肺炎相关医疗危机对溶酶体贮积症患者治疗的影响：意大利的首例经验
Impact of COVID-19 related healthcare crisis on treatments for patients with lysosomal storage disorders, the first Italian experience.
作者信息
Sechi Annalisa, Macor Daniela, Valent Serena, Da Riol Rosalia Maria, Zanatta Manuela, Spinelli Alessandro, Bianchi Katja, Bertossi Nadia, Dardis Andrea, Valent Francesca, Scarpa Maurizio
机构信息
Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
Regional Coordinating Center for Rare Diseases, University Hospital of Udine, Udine, Italy.
出版信息
Mol Genet Metab. 2020 Jul;130(3):170-171. doi: 10.1016/j.ymgme.2020.04.002. Epub 2020 Apr 29.
The direct and indirect effects of Coronavirus Disease-19 (COVID-19) pandemic, on Italian patients with lysosomal storage disorders receiving therapy, were analyzed by a phone questionnaire. No proved COVID-19 emerged among 102 interviewed. No problems were reported by patients receiving oral treatments. Forty-nine% of patients receiving enzyme replacement therapy in hospitals experienced disruptions, versus 6% of those home-treated. The main reasons of missed infusions were fear of infection (62.9%) and re-organization of the infusion centers (37%).
通过电话调查问卷分析了2019冠状病毒病（COVID-19）大流行对接受治疗的意大利溶酶体贮积症患者的直接和间接影响。在接受访谈的102名患者中未发现确诊的COVID-19病例。接受口服治疗的患者未报告任何问题。在医院接受酶替代治疗的患者中有49%经历了治疗中断，而在家接受治疗的患者这一比例为6%。错过输液的主要原因是害怕感染（62.9%）和输液中心的重新安排（37%）。
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