TY - JOUR
TI - Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project
AU - Garg, A.
AU - Neuren, E.
AU - Cha, D.
AU - Kirby, J.S.
AU - Ingram, J.R.
AU - Jemec, G.B.E.
AU - Esmann, S.
AU - Thorlacius, L.
AU - Villumsen, B.
AU - Marmol, V.D.
AU - Nassif, A.
AU - Delage, M.
AU - Tzellos, T.
AU - Moseng, D.
AU - Grimstad, Ø.
AU - Naik, H.
AU - Micheletti, R.
AU - Guilbault, S.
AU - Miller, A.P.
AU - Hamzavi, I.
AU - van der Zee, H.
AU - Prens, E.
AU - Kappe, N.
AU - Ardon, C.
AU - Kirby, B.
AU - Hughes, R.
AU - Zouboulis, C.C.
AU - Nikolakis, G.
AU - Bechara, F.G.
AU - Matusiak, L.
AU - Szepietowski, J.
AU - Glowaczewska, A.
AU - Smith, S.D.
AU - Goldfarb, N.
AU - Daveluy, S.
AU - Avgoustou, C.
AU - Giamarellos-Bourboulis, E.
AU - Cohen, S.
AU - Soliman, Y.
AU - Brant, E.G.
AU - Akilov, O.
AU - Sayed, C.
AU - Tan, J.
AU - Alavi, A.
AU - Lowes, M.A.
AU - Pascual, J.C.
AU - Riad, H.
AU - Fisher, S.
AU - Cohen, A.
AU - Paek, S.Y.
AU - Resnik, B.
AU - Ju, Q.
AU - Wang, L.
AU - Strunk, A.
JO - Journal of the American Academy of Dermatology
PY - 2020
VL - 82
TODO - 2
SP - 366-376
PB - Mosby Year Book Inc
SN - 0190-9622, 1097-6787
TODO - 10.1016/j.jaad.2019.06.1301
TODO - 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
TODO - 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.
ER -