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Peer-reviewedCC BY-NC 4.0Acta Dermato-Venereologica

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

  • Anne-Marte Henriksen1
  • Øystein Grimstad2
  • Ana Filipa Macedo3
  • Thrasyvoulos Tzellos4
  • Ditte Marie L. Saunte5
  • Inger Marie Skoie6
  • Ingrid Snekvik7
  • Tanja Tran3
  • Johan L. Hansen8
  • Aijing Shang9
  • Gregor B. Jemec5
9 affiliations
  1. 1University Hospital of North-Norway, Tromsø, Norway
  2. 2University Hospital of North-Norway, Tromsø, Norway; Department of Clinical Medicine, Faculty of Health Sciences, UiT - The Arctic University of Norway, Tromsø, Norway
  3. 3UCB, Brussels, Belgium
  4. 4Department of Clinical Medicine, Faculty of Health Sciences, UiT - The Arctic University of Norway, Tromsø, Norway; Department of Dermatology, Nordland Hospital Trust, Bodø, Norway; European Hidradenitis Suppurativa Foundation (EHSF) e.V., Dessau, Germany
  5. 5European Hidradenitis Suppurativa Foundation (EHSF) e.V., Dessau, Germany; Department of Dermatology, Zealand University Hospital, Roskilde, Denmark; Department of Allergy and Dermatology, Herlev-Gentofte University Hospital, Gentofte, Denmark; Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark
  6. 6Department of Dermatology, Stavanger University Hospital, Stavanger, Norway
  7. 7Department of Dermatology, St. Olavs Hospital, Trondheim, Norway
  8. 8Quantify Research, Stockholm, Sweden; Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway
  9. 9UCB, Basel, Switzerland
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Abstract

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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Cite

BibTeXRIS
BibTeX
@article{henriksen2026patient,
  title = {{Patient Journey, HS Burden and Unmet Need across Denmark and Norway: Real-World Data from the HISREG Registry}},
  author = {Anne-Marte Henriksen and Øystein Grimstad and Ana Filipa Macedo and Thrasyvoulos Tzellos and Ditte Marie L. Saunte and Inger Marie Skoie and Ingrid Snekvik and Tanja Tran and Johan L. Hansen and Aijing Shang and Gregor B. Jemec},
  journal = {Acta Dermato-Venereologica},
  year = {2026},
  month = nov,
  doi = {10.2340/actadv.v106.adv-2026-0505},
  url = {https://doi.org/10.2340/actadv.v106.adv-2026-0505},
  note = {CC BY-NC 4.0},
}
RIS
TY  - JOUR
TI  - Patient Journey, HS Burden and Unmet Need across Denmark and Norway: Real-World Data from the HISREG Registry
AU  - Anne-Marte Henriksen
AU  - Øystein Grimstad
AU  - Ana Filipa Macedo
AU  - Thrasyvoulos Tzellos
AU  - Ditte Marie L. Saunte
AU  - Inger Marie Skoie
AU  - Ingrid Snekvik
AU  - Tanja Tran
AU  - Johan L. Hansen
AU  - Aijing Shang
AU  - Gregor B. Jemec
PY  - 2026
DA  - 2026/11/04
JO  - Acta Dermato-Venereologica
DO  - 10.2340/actadv.v106.adv-2026-0505
UR  - https://doi.org/10.2340/actadv.v106.adv-2026-0505
AB  - 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.
SN  - 0001-5555
SN  - 1651-2057
ER  -