Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study
Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study
复制标题
DOI：
10.1007/s40744-020-00195-7
复制
发表时间：
2020-02-01
影响因子：
3.8
通讯作者：
Emmas, Cathy
中科院分区：
文献类型：
--
作者：
Nyman, Elisabeth;Vaughan, Timothy;Emmas, Cathy
在线健康社区和研究网络，如patislikeme （PLM）捕捉患者对疾病的看法，包括系统性红斑狼疮（SLE）。我们对PLM SLE患者提供的数据进行了回顾性观察性研究，以表征人口统计学、临床特征、患者经历和症状影响。方法纳入2011-2017年登记为PLM且报告SLE诊断和使用一种或多种SLE相关药物（抗疟药、免疫抑制剂、皮质类固醇、钙化神经磷酸酶抑制剂或生物制剂）治疗的成年人。PLM注册后30天内报告的信息用于评估患者的资格；人口统计学和临床特征；SLE治疗、症状、原发性狼疮表现和合并症的主要结局指标。结果在本分析纳入的21,101名PLM成员中，注册时、SLE症状发作和SLE诊断的中位年龄分别为46岁（四分位数范围[IQR] 38-53， n = 21,101）、30岁（IQR 21-39, n = 6489）和36岁（IQR 27-44, n = 6936）。大多数患者为女性（96.8%,n = 20,370）。居住国家报告了19,502例患者（92.4%），其中18,491例（94.8%）为美国居民。种族记录17994例（85.3%），其中白人67.8%，黑人/非裔美国人22.4%。患者报告平均使用2.2种sle相关药物，包括抗疟药（83.8%）、皮质类固醇（78.8%）、免疫抑制剂（32.3%）和生物制剂（9.4%）。至少80%报告这些症状的患者将疲劳、疼痛和关节疼痛评定为中度或重度。报道的原发性狼疮表现和合并症包括纤维肌痛（7.9%）、盘状狼疮（6.8%）、狼疮肾炎（6.3%）、类风湿关节炎（4.8%）、亚急性皮肤狼疮（4.7%）、中枢神经系统狼疮（3.9%）、干燥综合征（3.9%）和狼疮肺炎（3.1%）。结论：PLM SLE患者的年龄、性别和种族与美国一般SLE人群的特征基本一致。PLM SLE人群可以提供自我报告患者经历的有价值的数据。简明语言摘要本文提供简明语言摘要。
Introduction Online health communities and research networks such as PatientsLikeMe (PLM) capture patient perspectives of diseases, including systemic lupus erythematosus (SLE). We performed a retrospective observational study of data provided by patients in the PLM SLE community to characterize demographics, clinical characteristics, patient experience, and symptom impact. Methods Adults who registered with PLM in 2011-2017 and reported SLE diagnosis and treatment with one or more SLE-related drug (antimalarials, immunosuppressives, corticosteroids, calcineurin inhibitors, or biologics) were included in the analysis. Information reported within 30 days from PLM registration was used to assess patient eligibility; demographics and clinical characteristics; and primary outcome measures of SLE treatments, symptoms, primary lupus manifestations, and comorbidities. Results Among 21,101 PLM members included in this analysis, median ages at registration, onset of SLE symptoms, and SLE diagnosis were 46 years (interquartile range [IQR] 38-53, n = 21,101), 30 years (IQR 21-39; n = 6489), and 36 years (IQR 27-44; n = 6936), respectively. Most patients were female (96.8%, n = 20,370). Country of residence was reported by 19,502 patients (92.4%), of whom 18,491 (94.8%) were US residents. Race was recorded by 17,994 patients (85.3%), of whom 67.8% were white and 22.4% were black/African American. Patients reported a mean of 2.2 SLE-related medications, including antimalarials (83.8%), corticosteroids (78.8%), immunosuppressives (32.3%), and biologics (9.4%). Fatigue, pain, and joint pain were rated as moderate or severe by at least 80% of patients who reported these symptoms. Reported primary lupus manifestations and comorbidities included fibromyalgia (7.9%), discoid lupus (6.8%), lupus nephritis (6.3%), rheumatoid arthritis (4.8%), subacute cutaneous lupus (4.7%), central nervous system lupus (3.9%), Sjogren's syndrome (3.9%), and lupus pneumonitis (3.1%). Conclusions Age, sex, and race of patients in the PLM SLE community are broadly consistent with characteristics of the general SLE population in the United States. The PLM SLE population may provide valuable data on self-reported patient experience. Plain Language Summary Plain language summary available for this article.