Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey

Better understanding of the experience of people living with hidradenitis suppurativa (HS) is essential to identify gaps in current patient care and inform healthcare decision-making.

To describe the patient experience of individuals with HS, including their path to diagnosis, symptom control, treatments, healthcare utilization, patient needs and impact on quality of life.

The Hidradenitis Suppurativa Patient Experience survey was created, extensively reviewed and disseminated through engaging HS-related patient organizations, physician groups and social media groups.

In total, 537 respondents completed the survey; the mean age was 38 years (range 14-73 years) and 95% (510 of 537) were female. The mean number of treatment types per respondent was 15, and included antibacterial soaps (93.3%; 431 of 462), avoidance of tight clothing (90.9%; 419 of 462), use of oral antibiotics (79.7%; 368 of 462), nonprescription drugs (79.7%; 368 of 462) and topical antibiotics (77.1%; 356 of 262). Pain was poorly controlled in 46% of respondents (184 of 401). HS had a negative impact on the ability to work and attend school for 81% of respondents (337 of 415), with 59% (245 of 415) missing at least 2 days of work a month and 16% (66 of 415) missing > 11 days of work. The mean number of misdiagnoses per respondent was three and the median time to diagnosis was 10 years.

Individuals with HS experience a delay in diagnosis and have suboptimal control of the disease. We propose 11 recommendations to improve diagnosis, treatment and quality of life for individuals living with HS.