Abstract
BACKGROUND: Hidradenitis suppurativa (HS) is an understudied disease, and current HS studies have focused on participants already connected to dermatologic care. OBJECTIVE: We surveyed participants in online HS support communities to gain a comprehensive understanding of how provider type impacts HS disease management and the issues individuals with HS face when accessing care. METHODS: From June 13 to June 30, 2021, we administered an anonymous cross-sectional online survey to HS Facebook support group participants who had a self-confirmed diagnosis of HS. Survey items assessed respondent demographics, primary HS provider, and barriers to HS care and pain management. Descriptive analyses are presented. RESULTS: The survey was viewed 5,168 times and 1,040 surveys met eligibility criteria (20.1%). Survey participants were 97% female and 72% White. Seventy-two percentage resided in the United States and 22% in Europe. Forty-seven percentage reported having a dermatologist as their primary HS provider, 38% reported a nondermatologist, and 15% reported no HS provider. We found that Asian race, full-time employment, private health insurance, and urban setting were each associated with higher rates of having a dermatologist as a primary HS provider. However, 43.7% of those with a dermatologist reported biologic use, as compared with 14.5% with nondermatologist HS providers. Our cohort was notably more severely impacted by comorbid diseases; 55.9% of our cohort had anxiety, 53.6% had depression, and 50.7% had obesity. Overall, 74.2% of our cohort reported experiencing stigma while accessing care for their HS. LIMITATIONS: Participant recruitment via social media platform facilitates recruitment of individuals across the spectrum of healthcare access, but may introduce selection bias and favor well-resourced areas. Self-reported data may be subject to recall bias. CONCLUSION: Our study provides unique insights into the characteristics and experiences of individuals with HS across the spectrum of health care access.