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 Hamzavi; Hessel van der Zee; Errol Prens; Naomi Kappe; Christine Ardon; Brian Kirby; Rosalind Hughes; Christos 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

doi:10.1016/j.jaad.2019.06.1301

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 Hamzavi

Hessel van der Zee, Errol Prens, Naomi Kappe, Christine Ardon, Brian Kirby, Rosalind Hughes, Christos 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

Dermatologisk Afdeling

Publikation: Bidrag til tidsskrift › Artikel › Forskning › peer review

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.

Originalsprog	Engelsk
Sider (fra-til)	366-376
Antal sider	11
Tidsskrift	Journal of the American Academy of Dermatology
Vol/bind	82
Udgave nummer	2
Tidlig onlinedato	3 jul. 2019
DOI	https://doi.org/10.1016/j.jaad.2019.06.1301
Status	Udgivet - feb. 2020

Adgang til dokumentet

10.1016/j.jaad.2019.06.1301

Citationsformater

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

@article{5f7d6edc1ca145a8ad468818e9daa4dc,

title = "Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project",

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.",

keywords = "Adolescent, Adult, Female, Health Care Surveys, Hidradenitis Suppurativa/therapy, Humans, Male, Middle Aged, Needs Assessment, Prospective Studies, Young Adult, treatment, pain, acne inversa, diagnosis, hidradenitis suppurativa, Global VOICE, comorbid conditions, symptoms, life impact, patient, unmet needs, care",

author = "Amit Garg and Erica Neuren and Denny Cha and Kirby, \{Joslyn S\} and Ingram, \{John R\} and Jemec, \{Gregor B E\} and Solveig Esmann and Linnea Thorlacius and Bente Villumsen and Marmol, \{V{\'e}ronique Del\} and Aude Nassif and Maia Delage and Thrasyvoulos Tzellos and Dagfinn Moseng and {\O}ystein Grimstad and Haley Naik and Robert Micheletti and Sandra Guilbault and Miller, \{Angie Parks\} and Iltefat Hamzavi and \{van der Zee\}, Hessel and Errol Prens and Naomi Kappe and Christine Ardon and Brian Kirby and Rosalind Hughes and Christos Zouboulis and Georgios Nikolakis and Bechara, \{Falk G\} and Lukasz Matusiak and Jacek Szepietowski and Amelia Glowaczewska and Smith, \{Saxon D\} and Noah Goldfarb and Steven Daveluy and Christina Avgoustou and Evangelos Giamarellos-Bourboulis and Steven Cohen and Yssra Soliman and Brant, \{Elena Gonzalez\} and Oleg Akilov and Christopher Sayed and Jerry Tan and Afsaneh Alavi and Lowes, \{Michelle A\} and Pascual, \{Jos{\'e} Carlos\} and Hassan Riad and Shani Fisher and Arnon Cohen and Paek, \{So Yeon\} and Barry Resnik and Qiang Ju and Lanqi Wang and Andrew Strunk",

year = "2020",

month = feb,

doi = "10.1016/j.jaad.2019.06.1301",

language = "English",

volume = "82",

pages = "366--376",

journal = "Journal of the American Academy of Dermatology",

issn = "0190-9622",

publisher = "Elsevier",

number = "2",

}

Garg, A, Neuren, E, Cha, D, Kirby, JS, Ingram, JR, Jemec, GBE, Esmann, S, Thorlacius, L, Villumsen, B, Marmol, VD, Nassif, A, Delage, M, Tzellos, T, Moseng, D, Grimstad, Ø, Naik, H, Micheletti, R, Guilbault, S, Miller, AP, Hamzavi, I, van der Zee, H, Prens, E, Kappe, N, Ardon, C, Kirby, B, Hughes, R, Zouboulis, C, Nikolakis, G, Bechara, FG, Matusiak, L, Szepietowski, J, Glowaczewska, A, Smith, SD, Goldfarb, N, Daveluy, S, Avgoustou, C, Giamarellos-Bourboulis, E, Cohen, S, Soliman, Y, Brant, EG, Akilov, O, Sayed, C, Tan, J, Alavi, A, Lowes, MA, Pascual, JC, Riad, H, Fisher, S, Cohen, A, Paek, SY, Resnik, B, Ju, Q, Wang, L & 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, bind 82, nr. 2, s. 366-376. https://doi.org/10.1016/j.jaad.2019.06.1301

TY - JOUR

T1 - Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa

T2 - Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

AU - Garg, Amit

AU - Neuren, Erica

AU - Cha, Denny

AU - Kirby, Joslyn S

AU - Ingram, John R

AU - Jemec, Gregor B E

AU - Esmann, Solveig

AU - Thorlacius, Linnea

AU - Villumsen, Bente

AU - Marmol, Véronique Del

AU - Nassif, Aude

AU - Delage, Maia

AU - Tzellos, Thrasyvoulos

AU - Moseng, Dagfinn

AU - Grimstad, Øystein

AU - Naik, Haley

AU - Micheletti, Robert

AU - Guilbault, Sandra

AU - Miller, Angie Parks

AU - Hamzavi, Iltefat

AU - van der Zee, Hessel

AU - Prens, Errol

AU - Kappe, Naomi

AU - Ardon, Christine

AU - Kirby, Brian

AU - Hughes, Rosalind

AU - Zouboulis, Christos

AU - Nikolakis, Georgios

AU - Bechara, Falk G

AU - Matusiak, Lukasz

AU - Szepietowski, Jacek

AU - Glowaczewska, Amelia

AU - Smith, Saxon D

AU - Goldfarb, Noah

AU - Daveluy, Steven

AU - Avgoustou, Christina

AU - Giamarellos-Bourboulis, Evangelos

AU - Cohen, Steven

AU - Soliman, Yssra

AU - Brant, Elena Gonzalez

AU - Akilov, Oleg

AU - Sayed, Christopher

AU - Tan, Jerry

AU - Alavi, Afsaneh

AU - Lowes, Michelle A

AU - Pascual, José Carlos

AU - Riad, Hassan

AU - Fisher, Shani

AU - Cohen, Arnon

AU - Paek, So Yeon

AU - Resnik, Barry

AU - Ju, Qiang

AU - Wang, Lanqi

AU - Strunk, Andrew

PY - 2020/2

Y1 - 2020/2

N2 - 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.

AB - 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.

KW - Adolescent

KW - Adult

KW - Female

KW - Health Care Surveys

KW - Hidradenitis Suppurativa/therapy

KW - Humans

KW - Male

KW - Middle Aged

KW - Needs Assessment

KW - Prospective Studies

KW - Young Adult

KW - treatment

KW - pain

KW - acne inversa

KW - diagnosis

KW - hidradenitis suppurativa

KW - Global VOICE

KW - comorbid conditions

KW - symptoms

KW - life impact

KW - patient

KW - unmet needs

KW - care

U2 - 10.1016/j.jaad.2019.06.1301

DO - 10.1016/j.jaad.2019.06.1301

M3 - Article

C2 - 31279015

SN - 0190-9622

VL - 82

SP - 366

EP - 376

JO - Journal of the American Academy of Dermatology

JF - Journal of the American Academy of Dermatology

IS - 2

ER -

Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

Abstract

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