The Role of Digital Media in the Patient Journey of People With HS: Qualitative Interview Research

ABSTRACT Background Hidradenitis suppurativa (HS) is a chronic, stigmatising skin disease frequently associated with diagnostic delay and unmet informational needs. As digital media increasingly shape how individuals seek health information and decide when to seek care, their role in the HS patient journey remains insufficiently understood. Objectives This qualitative study explored how people with HS use and experience digital media across different stages of their disease. Methods Semi‐structured interviews were conducted with 20 adults with a confirmed HS diagnosis, purposively sampled for variability in age, sex, disease severity and treatment history. Interviews were analysed using Mayring's qualitative content analysis. Results Participants described long diagnostic delays, repeated misdiagnoses and considerable emotional and physical burden. Digital media, primarily search engines, YouTube, TikTok and online forums, played a central role in symptom interpretation, peer comparison and preparation for medical consultations. While online information provided reassurance and improved disease understanding, participants also reported confusion, misinformation and emotional distress. Most expressed a clear need for reliable, physician‐endorsed online resources, including visual materials and multimedia educational content, to support earlier recognition and informed decision‐making. Limitations This was a single‐centre, single‐country study with a small, purposively sampled cohort that was predominantly male (13/20), whereas HS shows a female predominance in European populations. Self‐selection towards participants with an interest in digital media cannot be excluded. Subgroup contrasts are exploratory given the small subgroup sizes, and interviews were conducted in German, so minor nuances may have been lost in translation of quoted passages. Conclusions Digital media appear to be an integral but ambivalent component of the HS patient journey. Strengthening evidence‐based digital resources may reduce diagnostic delays, enhance patient education and improve long‐term disease management.