Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project.
J Am Acad Dermatol
; 82(2): 366-376, 2020 Feb.
Article
en En
| MEDLINE
| ID: mdl-31279015
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.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Hidradenitis Supurativa
/
Evaluación de Necesidades
Tipo de estudio:
Clinical_trials
/
Observational_studies
Límite:
Adolescent
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Adult
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Revista:
J Am Acad Dermatol
Año:
2020
Tipo del documento:
Article