Schneider-Burrus Sylke, Tsaousi Athanasia, Barbus Sebastian, Huss-Marp Johannes, Witte Katrin, Wolk Kerstin, Fritz Björn, Sabat Robert
Interdisciplinary Group of Molecular Immunopathology, Dermatology/Medical Immunology, Charité - Universitätsmedizin Berlin, Berlin, Germany.
Center for Dermatosurgery, Havelklinik, Berlin, Germany.
Front Med (Lausanne). 2021 Apr 27;8:676241. doi: 10.3389/fmed.2021.676241. eCollection 2021.
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with an adverse impact on patients' quality of life (QoL). To quantify QoL impairment in patients in Germany suffering from HS and to identify the parameters associated with QoL impairment. A non-interventional, cross-sectional, mono-centric study with 500 HS patients. QoL data (measured using the Dermatology Life Quality Index; DLQI) and demographic, anamnestic, clinical, and blood parameters were collected. All patients were examined by dermatologists that documented the skin alterations. QoL data from 462 HS patients were available and evaluated. The mean (± standard deviation) DLQI score of HS patients was 13.18 ± 7.99. Approximately 40% and 20% of HS patients declared very large and extremely large QoL impairment, respectively. The degree of QoL disturbance correlated with the severity of skin alterations, blood leucocyte count and, in particular, with anogenital localization and the presence of nodules and fistulas. Furthermore, QoL impairment was associated with specific comorbidities, such as adiposity and back pain, but not with HS family history. QoL impairment was not influenced by whether or not the patients had undergone resection surgery or antibiotic treatment but was more severe in HS patients that had undergone abscess lancing compared to patients without such treatment in the past. It was a mono-centric study and most data were obtained from self-administered patient questionnaires. The association of QoL with type of treatment was analyzed for abscess lancing, resection surgery, and antibiotic treatment. Further therapeutic modalities recommended in the guidelines were not investigated. A profound impairment in QoL was present in patients with HS, and this was higher than that observed in other studied dermatoses. The degree of impairment correlated with the extent of cutaneous and some extra-cutaneous alterations. Surgical and conventional medicamentous therapies of HS were not associated with long-lasting reduction of QoL impairment. Our data support the implementation of patient-reported outcome measures for the assessment of therapy responses.
化脓性汗腺炎（HS）是一种慢性炎症性皮肤病，对患者的生活质量（QoL）有不利影响。旨在量化德国HS患者的生活质量损害，并确定与生活质量损害相关的参数。这是一项针对500名HS患者的非干预性、横断面、单中心研究。收集了生活质量数据（使用皮肤病生活质量指数；DLQI进行测量）以及人口统计学、既往史、临床和血液参数。所有患者均由皮肤科医生进行检查，医生记录了皮肤病变情况。对462名HS患者的生活质量数据进行了分析。HS患者的平均（±标准差）DLQI评分为13.18±7.99。分别约40%和20%的HS患者表示生活质量受到非常大及极其大的损害。生活质量干扰程度与皮肤病变严重程度、血液白细胞计数相关，尤其与肛门生殖器部位以及结节和瘘管的存在有关。此外，生活质量损害与特定合并症有关，如肥胖和背痛，但与HS家族史无关。生活质量损害不受患者是否接受过切除手术或抗生素治疗的影响，但与过去接受过脓肿切开引流的HS患者相比，未接受过此类治疗的患者生活质量损害更严重。这是一项单中心研究，大多数数据来自患者自行填写的问卷。分析了脓肿切开引流、切除手术和抗生素治疗与生活质量类型的关联。未对指南中推荐的其他治疗方式进行研究。HS患者存在严重的生活质量损害，且高于其他已研究的皮肤病。损害程度与皮肤及一些皮肤外病变的程度相关。HS的手术和传统药物治疗与生活质量损害的长期减轻无关。我们的数据支持采用患者报告的结局指标来评估治疗反应。
