Patient Journey and Unmet Needs in Hidradenitis Suppurativa: Insights from an Italian Survey.

Background/

Objectives

Hidradenitis suppurativa (HS), a chronic, inflammatory skin condition, severely affects quality of life. Despite advances in understanding its pathophysiology, major gaps persist in diagnosis and management. This study examined the journeys and unmet needs of Italian participants via an online survey, focusing on diagnostic delays, treatments, and quality of life for HS.

Methods

Data were collected through a survey shared by the HS patient association in a dedicated Facebook group, using 45 closed-ended questions through Computer-Assisted Web Interviews. A total of 320 participants completed the survey in January 2023.

Results

Participants reported consultations with approximately five clinicians before receiving a formal diagnosis, with a 10-year delay. Dissatisfaction with primary care was high (73%). Dermatologists played a central role in disease management. Only 24% of participants were on biologic therapy, despite the higher satisfaction levels compared to other treatments. HS was associated with quality-of-life impairments, particularly in psychological wellbeing (58%), daily functioning, and economic productivity. Unmet needs included better psychological support, improved access to biologics, nutritional guidance, and increased awareness of the disease among healthcare professionals.

Conclusions

HS imposes considerable physical, psychological, and economic burdens. Earlier diagnosis, improved treatment strategies, and enhanced patient-centered care are essential to reducing this burden.