Dataset 1 (Rheum-SURVEY) and Dataset 2 (SLE-SURVEY)
Reason: The datasets include the sensitive and personal information of patients.
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.