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

Adolescent Adult Female Health Care Surveys Hidradenitis Suppurativa / therapy Humans Male Middle Aged Needs Assessment Prospective Studies Young Adult

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

Journal

Journal of the American Academy of Dermatology

ISSN: 1097-6787

Titre abrégé: J Am Acad Dermatol

Pays: United States

ID NLM: 7907132

Informations de publication

Date de publication:
Feb 2020

Historique:

received: 13 02 2019

revised: 12 06 2019

accepted: 25 06 2019

pubmed: 7 7 2019

medline: 21 8 2020

entrez: 7 7 2019

Statut: ppublish

Résumé

A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. To evaluate unmet needs from the perspective of HS patients. Prospective multinational survey of patients between October 2017 and July 2018. 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. Data were self-reported. Patients with more severe disease may have been selected. HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.

Sections du résumé

BACKGROUND BACKGROUND

A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy.

OBJECTIVE OBJECTIVE

To evaluate unmet needs from the perspective of HS patients.

METHODS METHODS

Prospective multinational survey of patients between October 2017 and July 2018.

RESULTS 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 CONCLUSIONS

Data were self-reported. Patients with more severe disease may have been selected.

CONCLUSION CONCLUSIONS

HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.

Identifiants

DOI: 10.1016/j.jaad.2019.06.1301 PMID: 31279015

pubmed: 31279015

pii: S0190-9622(19)32300-X

doi: 10.1016/j.jaad.2019.06.1301

pii:

doi:

Types de publication

Journal Article Multicenter Study

Langues

eng

Sous-ensembles de citation

Pagination

366-376