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

Autor: 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
Přispěvatelé: 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), Institut Pasteur [Paris] (IP)
Rok vydání: 2020
Předmět:
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
Zdroj: Journal of the American Academy of Dermatology, 82(2), 366-376. Mosby Inc.
Journal of The American Academy of Dermatology
Journal of The American Academy of Dermatology, Elsevier, 2020, 82 (2), pp.366-376. ⟨10.1016/j.jaad.2019.06.1301⟩
JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY
r-ISABIAL. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica y Sanitaria de Alicante
instname
r-FISABIO: Repositorio Institucional de Producción Científica
Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana (FISABIO)
r-FISABIO. Repositorio Institucional de Producción Científica
Journal of The American Academy of Dermatology, 2020, 82 (2), pp.366-376. ⟨10.1016/j.jaad.2019.06.1301⟩
ISSN: 1097-6787
0190-9622
Popis: 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.
Databáze: OpenAIRE
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