Patient Journey, HS Burden and Unmet Need across Denmark and Norway: Real-World Data from the HISREG Registry

Patients with hidradenitis suppurativa experience considerable disease burden and reduced health-related quality of life (HRQoL). Diagnostic delays are common and may impede timely treatment initiation, contributing to disease progression. This study utilizes data (2010-2022) from the Scandinavian Registry for hidradenitis suppurativa (HISREG) in adult patients with hidradenitis suppurativa. Here, we report time between first hidradenitis suppurativa-related symptom, general practitioner visit and dermatologist visit; Dermatology Life Quality Index (DLQI) score and most impacted items; and hidradenitis suppurativa treatment patterns in Denmark, Norway and both countries combined. Analysis was stratified by Hurley stage. In both countries combined, considerable gaps (≥10 years) were reported between first hidradenitis suppurativa-related symptom and dermatologist visit, with the greatest delay in Hurley stage III patients (14 years). Mean DLQI scores ranged from 8.6 to 14.6; scores were highest in Hurley stage III patients. The most impacted DLQI items were "Itch/soreness/pain" or "Bothered/embarrassed". Surgery was more common in Hurley stage III vs I patients (30.1% vs 10.6%); 8.6% of Hurley stage III patients did not receive additional intervention for hidradenitis suppurativa (doctor-determined). In conclusion, HISREG-registered patients experienced substantial delays to dermatologist visits, impaired HRQoL and a paucity of effective treatments. These burdens were particularly pronounced for patients with moderate and severe hidradenitis suppurativa.