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Evaluating patients' unmet needs in hidradenitis suppurativa: results from the Global VOICE project

Garg, Amit, Neuren, Erica, Cha, Denny, Kirby, Joslyn S., Ingram, John R., Jemec, Gregor B.E., Esmann, Solveig, Thorlacius, Linnea, Villumsen, Bente, Marmol, Véronique del, Nassif, Aude, Delage, Maia, Tzellos, Thrasyvoulos, Moseng, Dagfinn, Grimstad, Øystein, Naik, Haley, Micheletti, Robert, Guilbault, Sandra, Miller, Angie Parks, Hamzavi, Iltefat, van der Zee, Hessel, Prens, Errol, Kappe, Naomi, Ardon, Christine, Kirby, Brian, Hughes, Rosalind, Zouboulis, Christos, Nikolakis, Georgios, Bechara, Falk G., Matusiak, Lukasz, Szepietowski, Jacek, Glowaczewska, Amelia, Smith, Saxon D., Goldfarb, Noah, Daveluy, Steven, Avgoustou, Christina, Giamarellos-Bourboulis, Evangelos, Cohen, Steven, Soliman, Yssra, Brant, Elena Gonzalez, Akilov, Oleg, Sayed, Christopher, Tan, Jerry, Alavi, Afsaneh, Lowes, Michelle A., Pascual, José Carlos, Riad, Hassan, Fisher, Shani, Cohen, Arnon, Paek, So Yeon, Resnik, Barry, Ju, Qiang, Wang, Lanqi and Strunk, Andrew 2019. Evaluating patients' unmet needs in hidradenitis suppurativa: results from the Global VOICE project. Journal of The American Academy of Dermatology , -. 10.1016/j.jaad.2019.06.1301
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Abstract

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.

Item Type: Article
Date Type: Published Online
Status: In Press
Schools: Medicine
Publisher: Elsevier
ISSN: 0190-9622
Date of First Compliant Deposit: 15 July 2019
Date of Acceptance: 25 June 2019
Last Modified: 16 Jul 2019 09:45
URI: http://orca.cf.ac.uk/id/eprint/124206

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