Department of Dermatology-Venereology, Robert-Debré Hospital, Reims, France.
Paris-Est University, UPEC, EA 7379 EpiDermE (Epidemiologie En Dermatologie et Evaluation des Thérapeutiques), Créteil, France.
Dermatology. 2021;237(5):748-758. doi: 10.1159/000513447. Epub 2021 Jan 27.
BACKGROUND: Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition substantially impacting patients' quality of life; the pathogenesis remains unclear, and treatment is complex and not yet standardized. Observational data are increasingly being used to evaluate therapeutics in "real-life" interventions, and the development of e-cohorts is offering new tools for epidemiological studies at the population level. OBJECTIVE: The aim of this study was to describe the clinical characteristics and treatment history of HS participants in the Community of Patients for Research (ComPaRe) cohort and to compare these to other cohorts. METHODS: We performed a cross-sectional study of the baseline data of HS participants in ComPaRe, an e-cohort of patients with chronic diseases. Data were collected using patient-reported questionnaires about clinical-dem-ographic aspects, quality of life, and treatment history. RESULTS: A total of 396 participants (339 females, 57 males) were included (mean age 38 years); 83 (21%) had a family history of HS, 227 (57.3%) were current smokers, and 241 (60.9%) were overweight or obese. Most of the participants declared a Hurley stage II (n = 263, 66.4%) or III (n = 76, 20.3%). The breast was more frequently affected in women than men (37.5 vs. 5.3%, p < 0.0001), whereas the dorsal region was more frequently affected in men (39.5 vs. 10.9%, p < 0.0001). Increased disease stage was associated with obesity (25.9 vs. 33.8 vs. 51.3%, p = 0.02) and some HS localizations (genital [p < 0.005], pubis [p < 0.007], gluteal fold [p = 0.02], and groin [p < 0.0001]). The most frequently prescribed treatments were oral antibiotics (n = 362, 91.4%), especially amoxicillin-clavulanic acid and cyclins. Less than 10% of participants received biologics. Most of these results were consistent with previously published cohorts. CONCLUSION: Recruitment of participants by such a web platform can be a faster way to get relevant scientific data for a wide variety of patients that could be used for epidemiological studies and to evaluate therapeutics in "real-life" interventions.
背景：化脓性汗腺炎（HS）是一种严重影响患者生活质量的慢性炎症性皮肤病；其发病机制仍不清楚，治疗复杂，尚未标准化。观察性数据越来越多地被用于评估“真实世界”干预措施中的治疗方法，电子队列的发展为人群水平的流行病学研究提供了新的工具。
目的：本研究旨在描述社区患者研究（ComPaRe）队列中 HS 参与者的临床特征和治疗史，并将其与其他队列进行比较。
方法：我们对 ComPaRe 慢性疾病患者电子队列中 HS 参与者的基线数据进行了横断面研究。数据通过患者报告的问卷收集，内容包括临床-人口统计学方面、生活质量和治疗史。
结果：共纳入 396 名参与者（339 名女性，57 名男性）（平均年龄 38 岁）；83 名（21%）有 HS 家族史，227 名（57.3%）是当前吸烟者，241 名（60.9%）超重或肥胖。大多数参与者报告的 Hurley 分期为 II 期（n = 263，66.4%）或 III 期（n = 76，20.3%）。女性乳房受累比男性更常见（37.5%比 5.3%，p < 0.0001），而男性背部受累更常见（39.5%比 10.9%，p < 0.0001）。疾病分期增加与肥胖（25.9%比 33.8%比 51.3%，p = 0.02）和某些 HS 定位（生殖器[ p < 0.005]、耻骨[ p < 0.007]、臀褶[ p = 0.02]和腹股沟[ p < 0.0001]）相关。最常开的治疗处方是口服抗生素（n = 362，91.4%），尤其是阿莫西林克拉维酸和环素。不到 10%的参与者接受了生物制剂。这些结果大多与以前发表的队列一致。
结论：通过这种网络平台招募参与者可以更快地获得广泛患者的相关科学数据，可用于流行病学研究，并评估“真实世界”干预措施中的治疗方法。
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