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.
■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。