BACKGROUND: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy.
OBJECTIVE: To evaluate unmet needs from the perspective of HS patients.
METHODS: Prospective multinational survey of patients between October, 2017 and July, 2018.
RESULTS: Majority (63.7%, n=827) visited a physician ≥5 times prior to receiving formal HS diagnosis. Mean delay in diagnosis was 10.2 years (+/- 8.9 years). Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4%, n=798) rated recent HS-related pain as moderate or higher, while 4.5% described recent pain to be worst possible. Access to dermatology was rated as difficult by 37.0% (n=481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n=563), and 14.5% were disabled due to disease. Patients reported high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.5%, respectively.
LIMITATIONS: Data was self-reported. Patients with more severe disease may have been selected.
CONCLUSIONS: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address
