@article{3104812,
    title = "Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project",
    author = "Garg, A. and Neuren, E. and Cha, D. and Kirby, J.S. and Ingram, J.R. and Jemec, G.B.E. and Esmann, S. and Thorlacius, L. and Villumsen, B. and Marmol, V.D. and Nassif, A. and Delage, M. and Tzellos, T. and Moseng, D. and Grimstad, Ø. and Naik, H. and Micheletti, R. and Guilbault, S. and Miller, A.P. and Hamzavi, I. and van der Zee, H. and Prens, E. and Kappe, N. and Ardon, C. and Kirby, B. and Hughes, R. and Zouboulis, C.C. and Nikolakis, G. and Bechara, F.G. and Matusiak, L. and Szepietowski, J. and Glowaczewska, A. and Smith, S.D. and Goldfarb, N. and Daveluy, S. and Avgoustou, C. and Giamarellos-Bourboulis, E. and Cohen, S. and Soliman, Y. and Brant, E.G. and Akilov, O. and Sayed, C. and Tan, J. and Alavi, A. and Lowes, M.A. and Pascual, J.C. and Riad, H. and Fisher, S. and Cohen, A. and Paek, S.Y. and Resnik, B. and Ju, Q. and Wang, L. and Strunk, A.",
    journal = "Journal of the American Academy of Dermatology",
    year = "2020",
    volume = "82",
    number = "2",
    pages = "366-376",
    publisher = "Mosby Year Book Inc",
    issn = "0190-9622, 1097-6787",
    doi = "10.1016/j.jaad.2019.06.1301",
    keywords = "adalimumab;  anakinra;  antibiotic agent;  cannabis;  corticosteroid;  cyclosporine;  dapsone;  etanercept;  etretin;  finasteride;  infliximab;  isotretinoin;  ixekizumab;  methotrexate;  mycophenolate mofetil;  oral contraceptive agent;  retinoid;  secukinumab;  spironolactone;  ustekinumab;  zinc, adult;  antiandrogen therapy;  anxiety disorder;  Article;  comorbidity;  depression;  dermatology;  disability;  disease exacerbation;  disease severity;  emergency ward;  female;  hair removal;  health care need;  human;  infertility;  inflammatory bowel disease;  major clinical study;  male;  needs assessment;  numeric rating scale;  pain;  patient satisfaction;  physician;  priority journal;  prospective study;  quality of life;  self report;  sexual dysfunction;  spondylarthritis;  substance abuse;  suicidal ideation;  suicide attempt;  suppurative hidradenitis;  adolescent;  clinical trial;  health care survey;  middle aged;  multicenter study;  needs assessment;  suppurative hidradenitis;  young adult, Adolescent;  Adult;  Female;  Health Care Surveys;  Hidradenitis Suppurativa;  Humans;  Male;  Middle Aged;  Needs Assessment;  Prospective Studies;  Young Adult",
    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. © 2019 American Academy of Dermatology, Inc."
}