Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa: results from the Global VOICE project
Garg A, Neuren E, Cha D, Kirby JS, Ingram JR, Jemec GBE, Esmann S, Thorlacius L, Villumsen B, Marmol VD, Nassif A, Delage M, Tzellos T, Moseng D, Grimstad O, Naik H, Micheletti R, Guilbault S, Miller AP, Hamzavi I, van der Zee H, Prens E, Kappe N, Ardon C, Kirby B, Hughes R, Zouboulis C, Nikolakis G, Bechara FG, Matusiak L, Szepietowski J, Glowaczewska A, Smith SD, Goldfarb N, Daveluy S, Avgoustou C, Giamarellos-Bourboulis E, Cohen S, Soliman Y, Brant EG, Akilov O, Sayed C, Tan J, Alavi A, Lowes MA, Pascual JC, Riad H, Fisher S, Cohen A, Paek SY, Resnik B, Ju Q, Wang L, and Strunk A. Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa: Results from the Global VOICE Project. J Am Acad Dermatol 2019.
Journal of the American Academy of Dermatology
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.
ePub ahead of print