Tavora Isabel Greco, Bissoli Gabriela Cabral, Miot Hélio Amante, Schmitt Juliano Vilaverde
Medical school student, Universidade Estadual Paulista, Botucatu (SP), Brazil.
Department of Dermatology and Radiotherapy, Universidade Estadual Paulista, Botucatu (SP), Brazil.
An Bras Dermatol. 2019 Jul 29;94(3):298-303. doi: 10.1590/abd1806-4841.20197687.
Hidradenitis suppurativa is a complex and infrequent autoinflammatory disease that impacts on quality of life. Its pathogenesis is not fully understood, which limits the development of curative treatments.
To evaluate clinical and quality of life aspects of hidradenitis suppurativa patients from a social group on the Internet.
A cross-sectional, Internet-based survey study among participants in a discussion group (Facebook) of individuals with hidradenitis suppurativa. Patients were asked to answer a questionnaire about clinical-demographic aspects and quality of life (DLQI-BRA).
A total of 390 individuals agreed to participate in the study, 82% of them female, median age (p25-p75), of 31 (25-37) years old, disease onset at 15 (13-23) years, family member affected in 20% of cases, overweight (BMI 29 [25-33]) kg/m2 and severe impact on quality of life (DLQI 20 [13-25]). Regarding Hurley's classification, the participants provided information that enabled classification into: I (19%), II (52%) and III (29%). More severe cases were associated with males (OR = 1.69), higher weight (BMI: OR = 1.03) non-white color (OR = 1.43) and higher frequency of other autoinflammatory diseases (OR = 1.37).
Voluntary adherence survey with self-completion of the questionnaire by 390 from about 1600 group members.
Hidradenitis suppurativa patients who participated in a social network group had onset of the disease after puberty, with a predominance in females and overweight people, with great impact on the quality of life.
化脓性汗腺炎是一种复杂且罕见的自身炎症性疾病，会影响生活质量。其发病机制尚未完全明确，这限制了治愈性治疗方法的开发。
评估来自互联网上一个社会群体的化脓性汗腺炎患者的临床及生活质量方面情况。
在一个化脓性汗腺炎患者讨论组（脸书）的参与者中开展一项基于互联网的横断面调查研究。要求患者回答一份关于临床人口统计学方面及生活质量（巴西版皮肤病生活质量指数）的问卷。
共有390人同意参与研究，其中82%为女性，年龄中位数（第25百分位数 - 第75百分位数）为31（25 - 37）岁，发病年龄为15（13 - 23）岁，20%的病例有家庭成员患病，超重（体重指数29 [25 - 33]）kg/m²，对生活质量有严重影响（皮肤病生活质量指数20 [13 - 25]）。关于赫尔利分类，参与者提供的信息可将其分为：Ⅰ级（19%）、Ⅱ级（52%）和Ⅲ级（29%）。更严重的病例与男性（比值比 = 1.69）、体重较高（体重指数：比值比 = 1.03）、非白人肤色（比值比 = 1.43）以及其他自身炎症性疾病的较高发病率（比值比 = 1.37）相关。
约1600名小组成员中有390人自愿参与并自行完成问卷的依从性调查。
参与社交网络小组的化脓性汗腺炎患者在青春期后发病，女性和超重者居多，对生活质量有很大影响。
