Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project
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.
|Keywords||acne inversa, care, comorbid conditions, diagnosis, Global VOICE, hidradenitis suppurativa, life impact, pain, patient, symptoms, treatment, unmet needs|
|Persistent URL||dx.doi.org/10.1016/j.jaad.2019.06.1301, hdl.handle.net/1765/123821|
|Journal||American Academy of Dermatology. Journal|
Garg, A. (Amit), Neuren, E. (Erica), Cha, D. (Denny), Kirby, J.S. (Joslyn S.), Ingram, J.R. (John R.), Jemec, G.B.E, … Strunk, A. (Andrew). (2020). Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project. American Academy of Dermatology. Journal, 82(2), 366–376. doi:10.1016/j.jaad.2019.06.1301