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 C. 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 HamzaviHessel van der Zee, Errol Prens, Naomi Kappe, Christine Ardon, Brian Kirby, Rosalind Hughes, Christos C. 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

Research output: Contribution to journal › Article › peer-review

132 Scopus citations

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.

Original language	English
Pages (from-to)	366-376
Number of pages	11
Journal	Journal of the American Academy of Dermatology
Volume	82
Issue number	2
DOIs	https://doi.org/10.1016/j.jaad.2019.06.1301
State	Published - 1 Feb 2020
Externally published	Yes

Keywords

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

ASJC Scopus subject areas

Dermatology

Access to Document

10.1016/j.jaad.2019.06.1301

Cite this

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{85ba63fe265a42f8ae6da1ead78722c2,

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

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 Zouboulis, {Christos C.} 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",

note = "Funding Information: Conflicts of interest: Dr Alavi reports grants and personal fees from AbbVie and personal fees from Galderma, Janssen, LEO Pharma, Novartis, Sanofi Aventis, and Valeant. Dr Bechara reports grants from AbbVie, Novartis, Inflarx, and Janssen. Dr Cohen received research grants from Janssen, Novartis, AbbVie, and Sanofi and has served as a consultant, advisor, or speaker to AbbVie, Amgen, Boehringer Ingelheim, Dexcel Pharma, Janssen, Lilly, Neopharm, Novartis, Perrigo, Pfizer, Rafa, and Sanofi. Dr Cohen reports grants from AbbVie and honoraria from Verrica Pharmaceuticals. Dr Daveluy reports personal fees from AbbVie and other from InflaRx. Dr del Marmol reports grants from AbbVie and personal fees from Sanofi. Dr Garg reports personal fees from Asana Biosciences, Amgen, AbbVie, Janssen, and UCB and grants from the National Psoriasis Foundation and AbbVie. Dr Giamarellos-Bourboulis reports personal fees from AbbVie, MSD Hellas, and Pfizer Hellas, grants and personal fees from XBiotech, InflaRx GmbH, and Biotest GmbH, and grants from bioMerieux, Marie Curie Grant European Sepsis Academy, Seventh Framework Programme for Research project hemoSpec, and Astellas Pharma Europe. Dr Hamzavi discloses AbbVie, advisory board, no compensation received; Clinuvel, Estee Lauder, Pfizer Inc, Allergan, GE, Incyte, AbbVie Esprit/P10-023, and Janssen Psolar/C0168Z08, principal investigator, research funding to institution; Janssen Biotech and Bayer, principal investigator, grants/research funding to institution; Lenicura and Johnson & Johnson, principal investigator, equipment provided to institution; Incyte, Pfizer, UCB, personal consultant fees; HS Foundation, president, noncompensated role; Global Vitiligo Foundation, cochair, noncompensated role; and AbbVie HS Registry/H13-147, Bristol-Myers Squibb (IM011047), Corrona/PSO-500, Eli-Lilly/14V-MC-JAIW and 14V-MC-JAIX, Janssen (CNT01959PS03002, CNT01959PS03009, and CNT01959HDS2001), and Merck/MK-3200-011, subinvestigator, research funding to institution. Dr Ingram reports personal fees from UCB Pharma and Novartis and other from AbbVie. Dr Jemec reports grants and personal fees from AbbVie, InflaRx, LEO Pharma, and UCB, personal fees from Coloplast and Pierre Fabre, grants from Janssen-Cilag, Regeneron, Sanofi, and Astra Zeneca, and other from Miiskin. Dr Kirby reports grants, personal fees, and nonfinancial support from AbbVie and personal fees from AbbVie, Incyte, and ChemoCentryx. Dr Lowes reports personal fees from AbbVie, Incyte, Xbiotech, and Janssen. Dr Resnik reports personal fees from AbbVie. Dr Sayed reports personal fees from AbbVie and Novartis and other from InflaRx and UCB. Dr Smith reports personal fees and other from AbbVie. Dr Szepietowski reports personal fees from AbbVie, Novartis, Pierre-Fabre, Menlo Therapeutics, Sienna Biopharmaceuticals, LEO Pharma, Trevi, Sandoz, Sanofi Genzyme, Janssen-Cilag, Amgen, Galapagos, InflaRx, Regeneron, and UCB. Dr Tan has a patent copyright holder for HSQoL and HiSQoL, with royalties paid. Dr Tzellos reports grants and personal fees from AbbVie and UCB. Dr van der Zee reports personal fees from AbbVie, InflaRx, Novartis, and Galderma. Dr Zouboulis reports personal fees and grants from AbbVie InflarRx, Novartis, and UCB, personal fees from Idorsia, and other from Incyte. Drs Akilov Ardon, Avgoustou Delage Esmann, Fisher, Glowaczewska, Goldfarb, Gonzalez Brant, Grimstad Hughes, Ju, Kappe, Matusiak, Micheletti Moseng Naik, Nassif, Nikolakis, Paek, Pascual, Prens, Riad, Thorlacius, Villumsen, and Wang have nothing to disclose. Denny Cha, Erica Neuren, Yssra Soliman, and Andrew Strunk have nothing to disclose. Publisher Copyright: {\textcopyright} 2019 American Academy of Dermatology, Inc.",

year = "2020",

month = feb,

day = "1",

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 = "Mosby Inc.",

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, CC, 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, vol. 82, no. 2, pp. 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 C.

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

N1 - Funding Information: Conflicts of interest: Dr Alavi reports grants and personal fees from AbbVie and personal fees from Galderma, Janssen, LEO Pharma, Novartis, Sanofi Aventis, and Valeant. Dr Bechara reports grants from AbbVie, Novartis, Inflarx, and Janssen. Dr Cohen received research grants from Janssen, Novartis, AbbVie, and Sanofi and has served as a consultant, advisor, or speaker to AbbVie, Amgen, Boehringer Ingelheim, Dexcel Pharma, Janssen, Lilly, Neopharm, Novartis, Perrigo, Pfizer, Rafa, and Sanofi. Dr Cohen reports grants from AbbVie and honoraria from Verrica Pharmaceuticals. Dr Daveluy reports personal fees from AbbVie and other from InflaRx. Dr del Marmol reports grants from AbbVie and personal fees from Sanofi. Dr Garg reports personal fees from Asana Biosciences, Amgen, AbbVie, Janssen, and UCB and grants from the National Psoriasis Foundation and AbbVie. Dr Giamarellos-Bourboulis reports personal fees from AbbVie, MSD Hellas, and Pfizer Hellas, grants and personal fees from XBiotech, InflaRx GmbH, and Biotest GmbH, and grants from bioMerieux, Marie Curie Grant European Sepsis Academy, Seventh Framework Programme for Research project hemoSpec, and Astellas Pharma Europe. Dr Hamzavi discloses AbbVie, advisory board, no compensation received; Clinuvel, Estee Lauder, Pfizer Inc, Allergan, GE, Incyte, AbbVie Esprit/P10-023, and Janssen Psolar/C0168Z08, principal investigator, research funding to institution; Janssen Biotech and Bayer, principal investigator, grants/research funding to institution; Lenicura and Johnson & Johnson, principal investigator, equipment provided to institution; Incyte, Pfizer, UCB, personal consultant fees; HS Foundation, president, noncompensated role; Global Vitiligo Foundation, cochair, noncompensated role; and AbbVie HS Registry/H13-147, Bristol-Myers Squibb (IM011047), Corrona/PSO-500, Eli-Lilly/14V-MC-JAIW and 14V-MC-JAIX, Janssen (CNT01959PS03002, CNT01959PS03009, and CNT01959HDS2001), and Merck/MK-3200-011, subinvestigator, research funding to institution. Dr Ingram reports personal fees from UCB Pharma and Novartis and other from AbbVie. Dr Jemec reports grants and personal fees from AbbVie, InflaRx, LEO Pharma, and UCB, personal fees from Coloplast and Pierre Fabre, grants from Janssen-Cilag, Regeneron, Sanofi, and Astra Zeneca, and other from Miiskin. Dr Kirby reports grants, personal fees, and nonfinancial support from AbbVie and personal fees from AbbVie, Incyte, and ChemoCentryx. Dr Lowes reports personal fees from AbbVie, Incyte, Xbiotech, and Janssen. Dr Resnik reports personal fees from AbbVie. Dr Sayed reports personal fees from AbbVie and Novartis and other from InflaRx and UCB. Dr Smith reports personal fees and other from AbbVie. Dr Szepietowski reports personal fees from AbbVie, Novartis, Pierre-Fabre, Menlo Therapeutics, Sienna Biopharmaceuticals, LEO Pharma, Trevi, Sandoz, Sanofi Genzyme, Janssen-Cilag, Amgen, Galapagos, InflaRx, Regeneron, and UCB. Dr Tan has a patent copyright holder for HSQoL and HiSQoL, with royalties paid. Dr Tzellos reports grants and personal fees from AbbVie and UCB. Dr van der Zee reports personal fees from AbbVie, InflaRx, Novartis, and Galderma. Dr Zouboulis reports personal fees and grants from AbbVie InflarRx, Novartis, and UCB, personal fees from Idorsia, and other from Incyte. Drs Akilov Ardon, Avgoustou Delage Esmann, Fisher, Glowaczewska, Goldfarb, Gonzalez Brant, Grimstad Hughes, Ju, Kappe, Matusiak, Micheletti Moseng Naik, Nassif, Nikolakis, Paek, Pascual, Prens, Riad, Thorlacius, Villumsen, and Wang have nothing to disclose. Denny Cha, Erica Neuren, Yssra Soliman, and Andrew Strunk have nothing to disclose. Publisher Copyright: © 2019 American Academy of Dermatology, Inc.

PY - 2020/2/1

Y1 - 2020/2/1

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 - Global VOICE

KW - acne inversa

KW - care

KW - comorbid conditions

KW - diagnosis

KW - hidradenitis suppurativa

KW - life impact

KW - pain

KW - patient

KW - symptoms

KW - treatment

KW - unmet needs

UR - http://www.scopus.com/inward/record.url?scp=85077662534&partnerID=8YFLogxK

U2 - 10.1016/j.jaad.2019.06.1301

DO - 10.1016/j.jaad.2019.06.1301

M3 - Article

C2 - 31279015

AN - SCOPUS:85077662534

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

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this