Authors

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

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: 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.

Copyright © 2019 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.