作者
Amit Garg, Erica Neuren, Denny Cha, Joslyn S Kirby, John R Ingram, Gregor BE 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
发表日期
2020/2/1
期刊
Journal of the American Academy of Dermatology
卷号
82
期号
2
页码范围
366-376
出版商
Mosby
简介
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 …
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