1. Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project
- Author
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Hessel H. van der Zee, Maïa Delage, Oleg E. Akilov, Hassan Riad, José C. Pascual, Brian Kirby, Angie Parks Miller, Qiang Ju, Solveig Esmann, Robert G. Micheletti, Erica Neuren, Dagfinn Moseng, Øystein Grimstad, L. Thorlacius, Yssra Soliman, Lanqi Wang, Haley B. Naik, Georgios Nikolakis, Amelia Głowaczewska, Noah Goldfarb, Iltefat H. Hamzavi, Gregor B.E. Jemec, Shani Fisher, Errol P. Prens, Jacek C Szepietowski, Joslyn S. Kirby, Evangelos J. Giamarellos-Bourboulis, Steven Daveluy, Denny Cha, Jerry Tan, So Yeon Paek, Falk G. Bechara, Saxon D Smith, Véronique Del Marmol, Steven R. Cohen, Andrew Strunk, Michelle A. Lowes, Christine B. Ardon, Lukasz Matusiak, Amit Garg, John R. Ingram, Christos C. Zouboulis, Christopher Sayed, Afsaneh Alavi, Christina Avgoustou, Thrasyvoulos Tzellos, B. Villumsen, Naomi Kappe, Arnon D. Cohen, Elena Gonzalez Brant, S. Guilbault, R. Hughes, Aude Nassif, Barry I. Resnik, Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Centre Médical de l'Institut Pasteur, Institut Pasteur [Paris], Medizinische Hochschule Brandenburg Theodor Fontane / Brandenburg Medical School Theodor-Fontane (MHB Theodor Fontane), Windsor Clinical Research Inc [Windsor, Ontario, Canada], Hofstra University [Hempstead], Centre Médical de l'Institut Pasteur (CMIP), and Institut Pasteur [Paris] (IP)
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Adult ,Male ,medicine.medical_specialty ,Adolescent ,diagnosis ,[SDV]Life Sciences [q-bio] ,comorbid conditions ,unmet needs ,Dermatology ,Disease ,Unmet needs ,Young Adult ,030207 dermatology & venereal diseases ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,life impact ,Health care ,medicine ,Humans ,pain ,Hidradenitis suppurativa ,Prospective Studies ,care ,ComputingMilieux_MISCELLANEOUS ,treatment ,Global VOICE, acne inversa, care, comorbid conditions, diagnosis, hidradenitis suppurativa, life impact, pain, patient, symptoms, treatment, unmet needs ,business.industry ,hidradenitis suppurativa ,Emergency department ,Middle Aged ,medicine.disease ,Hidradenitis Suppurativa ,3. Good health ,Global VOICE ,Mood disorders ,Health Care Surveys ,030220 oncology & carcinogenesis ,Family medicine ,Needs assessment ,acne inversa ,symptoms ,Female ,patient ,business ,Needs Assessment ,[SDV.MHEP]Life Sciences [q-bio]/Human health and pathology ,[SDV.MHEP.DERM]Life Sciences [q-bio]/Human health and pathology/Dermatology - 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 6 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.
- Published
- 2020
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