Abstract
Introduction
Hidradenitis suppurativa (HS) is an inflammatory dermatosis for which the treatment paradigm is rapidly expanding. We aimed to identify HS patient perspectives and barriers on biologics.
Methods
An anonymous survey was distributed between 10/2021 and 1/2022 through HS support groups. Data regarding demographics and perspectives on biologics were collected and analyzed.
Results
Of the 196 respondents, 92% were female (180/196) and 75% were white (147/196). 89.3% had Hurley stage 2/3 HS (102/195). The primary healthcare provider (HCP) for HS in 65% (128/196) of patients was a dermatologist, with 12% (23/196) seen at an HS specialty clinic. Most respondents never tried a biologic medicine (62%, 118/192). The top barriers to biologics were fear of side effects (61%, 109/179), high cost/lack of insurance coverage (46%, 83/179), frequency of weekly injections (32%, 58/179). Respondents reporting their main HCP as a non-dermatologist (4.11 vs 3.0, p < .0001) and not seen at a HS specialty clinic (3.5 vs 2.7, 0.039) were significantly more likely to agree ‘I do not know enough about how biologics work to help my HS’.
Conclusion
Our results highlight the importance of specialty care in the education and implementation of biologics. Patients may benefit from comprehensive discussion prior to starting biologics.
Acknowledgments
An anonymous survey was distributed with permission through online social media HS support groups with permission between October 2021 and January 2022. The authors are grateful to the members of HS support groups for their participation, including HS Connect, Hope for HS, and Hidradenitis Suppurativa Warriors.
Disclosure statement
VYS is on the board of directors for the Hidradenitis Suppurativa Foundation (HSF), is a stock shareholder of Learn Health and has served as an advisory board member, investigator, speaker, and/or received research funding from Sanofi Genzyme, Regeneron, AbbVie, Eli Lilly, Novartis, SUN Pharma, LEO Pharma, Pfizer, Incyte, Boehringer-Ingelheim, Aristea Therapeutics, Menlo Therapeutics, Dermira, Burt’s Bees, Galderma, Kiniksa, UCB, TARGET-Pharmasolutions, Altus Lab, MYOR, Polyfin, GpSkin and Skin Actives Scientific. JLH is on the board of directors for the Hidradenitis Suppurativa Foundation and has served as a consultant and speaker for AbbVie, and consultant for Boehringer-Ingelheim, Novartis, and UCB. There was no financial transaction for the preparation of this manuscript. All other authors report no conflicts of interest.
Data availability statement
Data available on request from the authors.