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 journalArticle

15 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)366-376
Number of pages11
JournalJournal of the American Academy of Dermatology
Volume82
Issue number2
DOIs
StatePublished - Feb 2020

Keywords

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

ASJC Scopus subject areas

  • Dermatology

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    Garg, A., Neuren, E., Cha, D., Kirby, J. S., Ingram, J. R., Jemec, G. B. E., Esmann, S., Thorlacius, L., Villumsen, B., Marmol, V. D., Nassif, A., Delage, M., Tzellos, T., Moseng, D., Grimstad, Ø., Naik, H., Micheletti, R., Guilbault, S., Miller, A. P., ... Strunk, A. (2020). Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project. Journal of the American Academy of Dermatology, 82(2), 366-376. https://doi.org/10.1016/j.jaad.2019.06.1301