Haut- und Venenzentrum Mainz, Dr. med. Uwe Kirschner and Colleagues, Mainz, Germany.
Temedica GmbH, Munich, Germany.
J Dtsch Dermatol Ges. 2024 Jun;22(6):803-809. doi: 10.1111/ddg.15411. Epub 2024 May 20.
The chronic inflammatory skin disease hidradenitis suppurativa (HS) leads to severe pain and reduced quality of life. Nonetheless, it often takes years until a correct diagnosis is made. In this analysis, disease-related experiences and pathways of patients with HS were investigated and compared with the physicians' perspective.
Public posts on forums and social media as well as results of a survey conducted among dermatologists and their patients on the actual medical care reality of HS in Germany were analysed. Furthermore, claims data from German health insurance companies were evaluated.
Patients with HS suffer from a 43.3% reduction in working ability. Dermatology (26.5%) was the most frequently consulted specialty, with HS diagnosed predominantly in the inpatient setting (43.8%). Abscesses were described as the most frequent alternative diagnosis in HS patients (53.2%). Patient-reported changes of physicians in dermatology (34.1%) and surgery (42.4%) occurred predominantly within the specialty. Dermatology received most referrals from general practitioners (67.1%), but only 12.1% from surgeons.
There is an urgent need to reduce the delay in diagnosis and the prolonged burden of disease in patients with HS. Therefore, awareness of the disease, its detection and treatment which goes beyond dermatology should be promoted, if possible as part of medical studies.
慢性炎症性皮肤病化脓性汗腺炎（HS）会导致严重疼痛和生活质量下降。尽管如此，通常需要数年时间才能做出正确的诊断。在这项分析中，研究了 HS 患者的疾病相关经历和途径，并将其与医生的观点进行了比较。
分析了论坛和社交媒体上的公开帖子，以及对德国皮肤科医生及其患者进行的关于 HS 实际医疗护理现状的调查结果。此外，还评估了德国健康保险公司的索赔数据。
HS 患者的工作能力下降了 43.3%。皮肤科（26.5%）是最常咨询的专科，HS 主要在住院环境中诊断（43.8%）。脓肿被描述为 HS 患者最常见的替代诊断（53.2%）。报告称，皮肤科（34.1%）和外科（42.4%）的医生变化主要发生在专科内。皮肤科从全科医生（67.1%）获得的转诊最多，但只有 12.1%来自外科医生。
迫切需要减少 HS 患者的诊断延迟和疾病负担的延长。因此，如果可能的话，应作为医学研究的一部分，提高对该病的认识，以及超越皮肤科的发现和治疗。
