Supporting data for “Epidemiology and clinical management of systemic lupus erythematosus in China”

The uploaded file includes two datasets that have been used in the thesis. Both of the datasets, including the data collection, were sponsored and conducted by the Third Affiliated Hospital of Sun Yat-sen University (Guangzhou, China). The ethical materials were approved by the Ethic Committee of the Third Affiliated Hospital of Sun Yat-sen University and all patients signed the informed consent.

Dataset 1 (Rheum-SURVEY) included 1,007 hospitalized patients with rheumatism from May 2018 to August 2018 in China, which was used to investigate the prevalence of lower bone mineral density in which 13.3% were patients with systemic lupus erythematosus, representing the second largest group in rheumatic patients. The potential associating factors were also explored simultaneously. Rheum-SURVEY was used in Chapter 4 in the thesis. The tool to collect data in Rheum-SURVEY was the questionnaire designed by epidemiologists, rheumatologists, relevant clinicians and technical analyst. 

Dataset 2 (SLE-SURVEY) included 1,509 patients with from June 2021 to December 2021. SLE-SURVEY included patient's demographic information, medication, health status, familiarity with the treatment guidelines and attitudes toward the disease. Patients’ medication, disease progression and risk factors were examined in Chapter 5. Patients’ familiarity with the treatment guidelines and attitude toward the disease were analyzed in Chapter 6. The tool to collect data was the digital survey (WJX) developed by rheumatologists, epidemiologists and clinicians in the Division of Rheumatology, Third Affiliated Hospital of Sun Yat-sen University. Pretest of the primary version of the survey was carried out in 20 patients. The survey was then adjusted and revised according to their feedback.

所上传的文件包含两个用于论文的数据集。这两个数据集及其数据收集均由中山大学第三附属医院（广州，中国）资助并执行。伦理材料已获得中山大学第三附属医院伦理委员会的批准，且所有患者均签署了知情同意书。

数据集1（Rheum-SURVEY）纳入了2018年5月至2018年8月期间中国1,007名住院的风湿病患者，用于调查低骨矿密度的患病率，其中13.3%为系统性红斑狼疮患者，占风湿病患者群体的第二大群体。同时，还探讨了潜在的关联因素。Rheum-SURVEY在论文的第四章中被使用。收集Rheum-SURVEY数据所使用的工具是由流行病学家、风湿病学家、相关临床医生和技术分析师设计的问卷。

数据集2（SLE-SURVEY）纳入了2021年6月至2021年12月期间的1,509名患者。SLE-SURVEY包括患者的人口统计学信息、用药情况、健康状况、对治疗指南的熟悉程度以及对疾病的看法。患者的用药、疾病进展和风险因素在论文的第五章中被考察。患者在治疗指南方面的熟悉程度和对疾病的看法在第六章中被分析。收集数据所使用的工具是由中山大学第三附属医院风湿病学分部的风湿病学家、流行病学家和临床医生开发的数字调查（WJX）。调查问卷的初版在20名患者中进行预测试。根据他们的反馈，对调查问卷进行了调整和修订。