PDF(Pubmed)
Abstract：
UNASSIGNED: This study aimed to explore the influence of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic among patients with juvenile systemic sclerosis (JSS).
UNASSIGNED: Twenty-seven patients (22 females, 5 males; mean age: 20 years; range, 17 to 22 years) diagnosed with JSS and followed up at the department of pediatric rheumatology were included in the cross-sectional study. A web-based survey was performed by focusing on patients\' complaints, accessibility to health care, and compliance with routine treatment from January 1, 2021, to January 10, 2021.
UNASSIGNED: Five (18.5%) patients had deterioration of the disease, while six (22.2%) patients reported irregular usage of their routine scleroderma treatment during the last six months. Nine (33.3%) patients had missed their routine clinic control since the proclamation of the SARS-CoV-2 pandemic. Seven (25.9%) patients had household contact with coronavirus disease 2019 (COVID-19). Four (14.8%) patients were diagnosed with COVID-19, and only one (3.7%) was hospitalized. Nine patients were under biological treatment (tocilizumab); however, only one of them was diagnosed with COVID-19.
UNASSIGNED: The COVID-19 pandemic has not significantly disrupted the medical care of JSS patients. Telemedicine could be an acceptable option for JSS patients disenabled to come to the hospital.
UNASSIGNED: Twenty-seven patients (22 females, 5 males; mean age: 20 years; range, 17 to 22 years) diagnosed with JSS and followed up at the department of pediatric rheumatology were included in the cross-sectional study. A web-based survey was performed by focusing on patients\' complaints, accessibility to health care, and compliance with routine treatment from January 1, 2021, to January 10, 2021.
UNASSIGNED: Five (18.5%) patients had deterioration of the disease, while six (22.2%) patients reported irregular usage of their routine scleroderma treatment during the last six months. Nine (33.3%) patients had missed their routine clinic control since the proclamation of the SARS-CoV-2 pandemic. Seven (25.9%) patients had household contact with coronavirus disease 2019 (COVID-19). Four (14.8%) patients were diagnosed with COVID-19, and only one (3.7%) was hospitalized. Nine patients were under biological treatment (tocilizumab); however, only one of them was diagnosed with COVID-19.
UNASSIGNED: The COVID-19 pandemic has not significantly disrupted the medical care of JSS patients. Telemedicine could be an acceptable option for JSS patients disenabled to come to the hospital.
摘要：
■本研究旨在探讨严重急性呼吸道综合征冠状病毒2（SARS-CoV-2）大流行对青少年系统性硬化症（JSS）患者的影响。
■27名患者（22名女性，5名男性；平均年龄：20岁；范围，横断面研究包括17至22年）诊断为JSS并在小儿风湿病科进行随访。一项基于网络的调查是通过关注患者的投诉来进行的，获得医疗保健的机会，以及2021年1月1日至2021年1月10日的常规治疗依从性。
■5名（18.5%）患者病情恶化，而6名(22.2%)患者报告在过去6个月中不规律地使用常规硬皮病治疗。自宣布SARS-CoV-2大流行以来，有9名（33.3％）患者错过了常规的临床控制。7名（25.9%）患者家庭接触2019年冠状病毒病（COVID-19）。4例（14.8%）患者被诊断为COVID-19，只有1例（3.7%）住院。9名患者接受生物治疗（托珠单抗）；然而，其中只有一人被诊断为COVID-19。
■COVID-19大流行并未显着破坏JSS患者的医疗保健。对于无法进入医院的JSS患者来说，远程医疗可能是可以接受的选择。
■27名患者（22名女性，5名男性；平均年龄：20岁；范围，横断面研究包括17至22年）诊断为JSS并在小儿风湿病科进行随访。一项基于网络的调查是通过关注患者的投诉来进行的，获得医疗保健的机会，以及2021年1月1日至2021年1月10日的常规治疗依从性。
■5名（18.5%）患者病情恶化，而6名(22.2%)患者报告在过去6个月中不规律地使用常规硬皮病治疗。自宣布SARS-CoV-2大流行以来，有9名（33.3％）患者错过了常规的临床控制。7名（25.9%）患者家庭接触2019年冠状病毒病（COVID-19）。4例（14.8%）患者被诊断为COVID-19，只有1例（3.7%）住院。9名患者接受生物治疗（托珠单抗）；然而，其中只有一人被诊断为COVID-19。
■COVID-19大流行并未显着破坏JSS患者的医疗保健。对于无法进入医院的JSS患者来说，远程医疗可能是可以接受的选择。
