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Garg, A. (Amit), Neuren, E. (Erica), Cha, D. (Denny), Kirby, J.S. (Joslyn S.), Ingram, J.R. (John R.), G.B.E. Jemec (Gregor), S. Esmann, Thorlacius, L. (Linnea), Villumsen, B. (Bente), Marmol, V.D. (Véronique del), et al. Nassif, A. (Aude), Delage, M. (Maia), T. Tzellos (Thrasivoulos), Moseng, D. (Dagfinn), Grimstad, Ø. (Øystein), Naik, H. (Haley), Micheletti, R. (Robert), Guilbault, S. (Sandra), Miller, A.P. (Angie Parks), I. Hamzavi, H.H. van der Zee (Hessel), E.P. Prens (Errol), Kappe, N. (Naomi), C. Ardon (Christine), Kirby, B. (Brian), Hughes, R. (Rosalind), Zouboulis, C.C. (Christos C.), Nikolakis, G. (Georgios), Bechara, F.G. (Falk G.), L. Matusiak, Szepietowski, J. (Jacek), Glowaczewska, A. (Amelia), Smith, S.D. (Saxon D.), Goldfarb, N. (Noah), Daveluy, S. (Steven), Avgoustou, C. (Christina), Giamarellos-Bourboulis, E. (Evangelos), Cohen, S. (Steven), Soliman, Y. (Yssra), Brant, E.G. (Elena Gonzalez), Akilov, O. (Oleg), Sayed, C. (Christopher), Tan, J. (Jerry), Alavi, A. (Afsaneh), Lowes, M.A. (Michelle A.), Pascual, J.C. (José Carlos), H. Riad, Fisher, S. (Shani), A. Cohen (Arnon), Paek, S.Y. (So Yeon), Resnik, B. (Barry), Ju, Q. (Qiang), Wang, L. (Lanqi) and Strunk, A. (Andrew)

2020-02-01

Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

Publication

Publication

American Academy of Dermatology. Journal , Volume 82 - Issue 2 p. 366- 376

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.

Additional Metadata
Keywords acne inversa, care, comorbid conditions, diagnosis, Global VOICE, hidradenitis suppurativa, life impact, pain, patient, symptoms, treatment, unmet needs
Persistent URL doi.org/10.1016/j.jaad.2019.06.1301, hdl.handle.net/1765/123821
Journal American Academy of Dermatology. Journal
Organisation Department of Dermatology
Citation
Garg, A. (Amit), Neuren, E. (Erica), Cha, D. (Denny), Kirby, J.S. (Joslyn S.), Ingram, J.R. (John R.), Jemec, G., … 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
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