Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

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 HamzaviHessel 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

Research output: Contribution to journalArticlepeer-review

167 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)366-376
Number of pages11
JournalJournal of the American Academy of Dermatology
Issue number2
StatePublished - Feb 2020

Bibliographical note

Funding Information:
Conflicts of interest: Dr Alavi reports grants and personal fees from AbbVie and personal fees from Galderma, Janssen, LEO Pharma, Novartis, Sanofi Aventis, and Valeant. Dr Bechara reports grants from AbbVie, Novartis, Inflarx, and Janssen. Dr Cohen received research grants from Janssen, Novartis, AbbVie, and Sanofi and has served as a consultant, advisor, or speaker to AbbVie, Amgen, Boehringer Ingelheim, Dexcel Pharma, Janssen, Lilly, Neopharm, Novartis, Perrigo, Pfizer, Rafa, and Sanofi. Dr Cohen reports grants from AbbVie and honoraria from Verrica Pharmaceuticals. Dr Daveluy reports personal fees from AbbVie and other from InflaRx. Dr del Marmol reports grants from AbbVie and personal fees from Sanofi. Dr Garg reports personal fees from Asana Biosciences, Amgen, AbbVie, Janssen, and UCB and grants from the National Psoriasis Foundation and AbbVie. Dr Giamarellos-Bourboulis reports personal fees from AbbVie, MSD Hellas, and Pfizer Hellas, grants and personal fees from XBiotech, InflaRx GmbH, and Biotest GmbH, and grants from bioMerieux, Marie Curie Grant European Sepsis Academy, Seventh Framework Programme for Research project hemoSpec, and Astellas Pharma Europe. Dr Hamzavi discloses AbbVie, advisory board, no compensation received; Clinuvel, Estee Lauder, Pfizer Inc, Allergan, GE, Incyte, AbbVie Esprit/P10-023, and Janssen Psolar/C0168Z08, principal investigator, research funding to institution; Janssen Biotech and Bayer, principal investigator, grants/research funding to institution; Lenicura and Johnson & Johnson, principal investigator, equipment provided to institution; Incyte, Pfizer, UCB, personal consultant fees; HS Foundation, president, noncompensated role; Global Vitiligo Foundation, cochair, noncompensated role; and AbbVie HS Registry/H13-147, Bristol-Myers Squibb (IM011047), Corrona/PSO-500, Eli-Lilly/14V-MC-JAIW and 14V-MC-JAIX, Janssen (CNT01959PS03002, CNT01959PS03009, and CNT01959HDS2001), and Merck/MK-3200-011, subinvestigator, research funding to institution. Dr Ingram reports personal fees from UCB Pharma and Novartis and other from AbbVie. Dr Jemec reports grants and personal fees from AbbVie, InflaRx, LEO Pharma, and UCB, personal fees from Coloplast and Pierre Fabre, grants from Janssen-Cilag, Regeneron, Sanofi, and Astra Zeneca, and other from Miiskin. Dr Kirby reports grants, personal fees, and nonfinancial support from AbbVie and personal fees from AbbVie, Incyte, and ChemoCentryx. Dr Lowes reports personal fees from AbbVie, Incyte, Xbiotech, and Janssen. Dr Resnik reports personal fees from AbbVie. Dr Sayed reports personal fees from AbbVie and Novartis and other from InflaRx and UCB. Dr Smith reports personal fees and other from AbbVie. Dr Szepietowski reports personal fees from AbbVie, Novartis, Pierre-Fabre, Menlo Therapeutics, Sienna Biopharmaceuticals, LEO Pharma, Trevi, Sandoz, Sanofi Genzyme, Janssen-Cilag, Amgen, Galapagos, InflaRx, Regeneron, and UCB. Dr Tan has a patent copyright holder for HSQoL and HiSQoL, with royalties paid. Dr Tzellos reports grants and personal fees from AbbVie and UCB. Dr van der Zee reports personal fees from AbbVie, InflaRx, Novartis, and Galderma. Dr Zouboulis reports personal fees and grants from AbbVie InflarRx, Novartis, and UCB, personal fees from Idorsia, and other from Incyte. Drs Akilov Ardon, Avgoustou Delage Esmann, Fisher, Glowaczewska, Goldfarb, Gonzalez Brant, Grimstad Hughes, Ju, Kappe, Matusiak, Micheletti Moseng Naik, Nassif, Nikolakis, Paek, Pascual, Prens, Riad, Thorlacius, Villumsen, and Wang have nothing to disclose. Denny Cha, Erica Neuren, Yssra Soliman, and Andrew Strunk have nothing to disclose.

Publisher Copyright:
© 2019 American Academy of Dermatology, Inc.


  • Global VOICE
  • acne inversa
  • care
  • comorbid conditions
  • diagnosis
  • hidradenitis suppurativa
  • life impact
  • pain
  • patient
  • symptoms
  • treatment
  • unmet needs


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