Cited 72 times since 2019 (14.9 per year) source: EuropePMC Journal of the American Academy of Dermatology, Volume 82, Issue 2, 3 1 2019, Pages 366-376 Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (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 Ø, 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 CC, 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, Strunk A
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
Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 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, and 4.5% described recent pain to be the 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 a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively.
Limitations
Data were self-reported. Patients with more severe disease may have been selected.
Conclusion
HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.
