Patient Journey, HS Burden and Unmet Need across Denmark and Norway: Real-World Data from the HISREG Registry
DOI:
https://doi.org/10.2340/actadv.v106.adv-2026-0505Keywords:
disease burden, hidradenitis suppurativa, quality of life, treatment needAbstract
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.
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