Diagnostic delay in Hidradenitis suppurativa investigated using data from social media and from statutory health insurances

Uwe Kirschner, Maria Kahn, Steffeni Papukchieva, Karolina Stosio, Andreas Keis, Mona H.C. Biermann, Gisela Häusser-Fruh, Lisa Sturm, Markus Eberl, Benjamin Friedrich, Hjalmar Kurzen

Research output: Contribution to journalArticlepeer-review


Background: 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. Methods: 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. Results: 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. Conclusion: 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.

Original languageEnglish
Pages (from-to)803-809
Number of pages7
JournalJDDG - Journal of the German Society of Dermatology
Issue number6
StatePublished - Jun 2024


  • Hidradenitis suppurativa
  • diagnostic delay
  • real-world evidence
  • social listening


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