458 Hidradenitis suppurativa: Delays in care and misdiagnoses

Abstract

Diagnostic delay and health care barriers are commonly faced by hidradenitis suppurativa (HS) patients. We sought to (1) identify reasons HS patients delay seeking care after symptom onset, and (2) identify common HS misdiagnoses by physicians. Between 2017 and 2019, 873 individuals with HS responded to an anonymous survey offered at several HS specialty clinics in the U.S. and online via Facebook HS support groups. Data regarding demographics, personal reasons for delay in presenting to a health care provider, and previously received misdiagnoses were collected. A majority of respondents (85%) reported a delay in seeking care, with a mean delay of 5.1 (STD 7.3) years. The top reason for delay was the belief that lesions would resolve (59.7%), while other reasons included embarrassment (42.4%) or lack of knowledge that treatments are available (32.3%). Younger HS patients were significantly more likely to report embarrassment (p<0.0001) and not knowing where to seek care (p<0.05). Individuals who reported at least one prior misdiagnosis of HS symptoms (66% of total survey respondents) had a mean delay in HS diagnosis of 10.4 years. The most common misdiagnoses were abscesses (45.4%), cysts (43.7%), and acne (31.2%). Compared to Hurley Stage 1 and 2, Hurley Stage 3 respondents were significantly more likely to have been misdiagnosed with MRSA (p=0.0021), abscesses (p<0.0001), and sexually transmitted infections (p<0.0001). HS patients have significant delays in care and are frequently misdiagnosed when they first present to a healthcare provider. Reasons for barriers to care are multifactorial but all contribute to increased disease burden. Outreach to younger individuals and public awareness programs aimed at normalizing this disorder, along with improved front-line provider education supporting early specialist referral may be especially valuable.