Updyke Katelyn Mariko, Urso Brittany, Beg Shazia, Solomon James
University of Central Florida College of Medicine.
Medical Student, University of Central Florida College of Medicine.
Cureus. 2017 Oct 9;9(10):e1762. doi: 10.7759/cureus.1762.
Systemic lupus erythematosus (SLE) is a multi-organ, autoimmune disease in which patients lose self-tolerance and develop immune complexes which deposit systemically causing multi-organ damage and inflammation. Patients often experience unpredictable flares of symptoms with poorly identified triggers. Literature suggests exogenous exposures may contribute to flares in symptoms. An online pilot survey was marketed globally through social media to self-reported SLE patients with the goal to identify specific subpopulations who are susceptible to disease state changes based on analyzed exogenous factors. The pilot survey was promoted for two weeks, 80 respondents fully completed the survey and were included in statistical analysis. Descriptive statistical analysis was performed on de-identified patient surveys and compared to previous literature studies reporting known or theorized triggers in the SLE disease state. The pilot survey identified similar exogenous triggers compared to previous literature, including antibiotics, increasing beef intake, and metal implants. The goal of the pilot survey is to utilize similar questions to develop a detailed internet-based patient interactive form that can be edited and time stamped as a method to promote continuous quality improvement assessments. The ultimate objective of the platform is to interact with SLE patients from across the globe longitudinally to optimize disease control and improve quality of care by allowing them to avoid harmful triggers.
系统性红斑狼疮(SLE)是一种多器官自身免疫性疾病,患者会丧失自身耐受性并形成免疫复合物,这些复合物会在全身沉积,导致多器官损伤和炎症。患者经常会经历症状的不可预测发作,且诱因难以确定。文献表明,外源性暴露可能会导致症状发作。通过社交媒体在全球范围内对自我报告的SLE患者进行了一项在线初步调查,目的是根据分析的外源性因素确定易患疾病状态变化的特定亚人群。初步调查进行了两周,80名受访者完全完成了调查并被纳入统计分析。对经过身份识别处理的患者调查进行了描述性统计分析,并与之前报道SLE疾病状态下已知或理论上的诱因的文献研究进行了比较。与之前的文献相比,初步调查确定了类似的外源性诱因,包括抗生素、牛肉摄入量增加和金属植入物。初步调查的目标是利用类似问题开发一个详细的基于互联网的患者交互式表单,该表单可以编辑并加盖时间戳,作为促进持续质量改进评估的一种方法。该平台的最终目标是与全球各地的SLE患者进行纵向互动,通过让他们避免有害诱因来优化疾病控制并提高护理质量。