Leuchten N, Milke B, Winkler-Rohlfing B, Daikh D, Dörner T, Johnson S R, Aringer M
1 Department of Medicine III, University Medical Center Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany.
2 Lupus Erythematodes Selbsthilfegemeinschaft e.V., Wuppertal, Germany.
Lupus. 2018 Aug;27(9):1431-1436. doi: 10.1177/0961203318776093. Epub 2018 May 17.
Objective The European League Against Rheumatism and the American College of Rheumatology jointly embarked on a new classification criteria for systemic lupus erythematosus (SLE) project. Its first phase involved generation of a broad set of items potentially useful for classification of SLE. This study was undertaken to add the patient perspective to an expert Delphi approach and an early patient cohort study. Methods A national cross-sectional study was conducted. A self-report questionnaire was published in the "Schmetterling" (Butterfly), the quarterly journal of the German SLE patient association. Individuals with SLE were asked to anonymously complete the questionnaire, which asked for demographic details, organ manifestations, autoantibodies and symptoms. Results A total of 339 completed questionnaires out of 2498 were returned, a response rate of 13.6%; 83.2% reported they were ANA positive and 81.7% reported joint, 66.1% skin and 33.0% renal involvement. For the time before and in the first year after their SLE diagnosis, the majority reported fatigue (89.4%), joint pain (86.7%), photosensitivity (79.4%) and myalgia (76.1%). Of interest, more than half of the patients reported fever as an early symptom (53.7%). Conclusion For a Caucasian European SLE patient population, the overall characteristics suggest meaningful representation. While many symptoms were reported as expected, the high percentage of patients reporting fever and the significant number of patients with unexpected gastrointestinal complaints are of particular interest. These data add to the information on early SLE symptoms informing the development process of new SLE classification criteria.
目的 欧洲抗风湿病联盟和美国风湿病学会联合开展了一项针对系统性红斑狼疮（SLE）的新分类标准项目。其第一阶段涉及生成一系列可能对SLE分类有用的项目。本研究旨在将患者观点纳入专家德尔菲法和早期患者队列研究中。方法 进行了一项全国性横断面研究。一份自我报告问卷发表在德国SLE患者协会的季刊《Schmetterling》（蝴蝶）上。要求SLE患者匿名填写问卷，问卷内容包括人口统计学细节、器官表现、自身抗体和症状。结果 2498份问卷共收回339份完整问卷，回复率为13.6%；83.2%的患者报告抗核抗体阳性，81.7%报告有关节受累，66.1%报告有皮肤受累，33.0%报告有肾脏受累。对于SLE诊断前及诊断后第一年的时间，大多数患者报告有疲劳（89.4%）、关节疼痛（86.7%）、光敏性（79.4%）和肌痛（76.1%）。有趣的是，超过一半的患者报告发热是早期症状（53.7%）。结论 对于欧洲白种人SLE患者群体，总体特征表明具有有意义的代表性。虽然许多症状如预期那样被报告，但报告发热的患者比例较高以及有意外胃肠道症状的患者数量较多尤其令人关注。这些数据为新SLE分类标准制定过程中有关SLE早期症状的信息增添了内容。
