Dermatology · General Practice ·
HISREG data show long delays and substantial burden in hidradenitis suppurativa
A real-world analysis of adult patients in Denmark and Norway used 2010–2022 data from the HISREG registry to examine care delays, quality of life and treatment by Hurley stage. Patients had delays of at least 10 years from first symptoms to dermatologist visits; burden was greatest in stage III disease.
- Dermatology visits followed first symptoms by at least 10 years.
- Stage III patients had the longest reported delay: 14 years.
- Mean DLQI scores ranged from 8.6 to 14.6.
- Surgery was more common in stage III than stage I.
Researchers analyzed 2010–2022 data from the Scandinavian Registry for hidradenitis suppurativa (HISREG), covering adults in Denmark and Norway. The registry analysis examined time from first hidradenitis suppurativa (HS) symptoms to general-practitioner and dermatologist visits, Dermatology Life Quality Index (DLQI) scores, and treatment patterns, with results stratified by Hurley stage. The source does not report the number of patients included.
Across both countries, the interval from first symptoms to a dermatologist visit was at least 10 years; the reported delay reached 14 years for patients with Hurley stage III disease. Mean DLQI scores ranged from 8.6 to 14.6 and were highest in stage III. The most affected quality-of-life items were itching, soreness or pain, and feeling bothered or embarrassed. Surgery was reported in 30.1% of stage III patients versus 10.6% of stage I patients. A further 8.6% of stage III patients received no additional HS intervention, as determined by their doctor.
These registry findings describe substantial delays, impaired quality of life and differences in treatment by disease severity among registered patients. They do not establish why delays occurred or whether earlier intervention would improve outcomes; the findings may not represent all people with HS in either country.
In practice
For clinicians caring for adults with hidradenitis suppurativa, this registry analysis highlights a prolonged interval between first symptoms and dermatology visits in Denmark and Norway, with the longest reported delay in Hurley stage III disease. The findings may support attention to timely assessment and referral when HS is suspected, but they do not test a referral strategy or show that earlier referral changes outcomes. Registry-based findings may not represent all patients, and the source does not state the sample size.
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Acta Dermato-Venereologica: Patient Journey, HS Burden and Unmet Need across Denmark and Norway: Real-World Data from the HISREG Registry ↗This is an automated AI-condensed summary that has not yet been reviewed by an editor. Always consult the full item at the original source.