Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project - 09/01/20
Doi : 10.1016/j.jaad.2019.06.1301
Amit Garg, MD a, ⁎ 
, Erica Neuren, BA a, Denny Cha, BA a, Joslyn S. Kirby, MD, MS, Med b, John R. Ingram, MD c, Gregor B.E. Jemec, MD, DMSc d, Solveig Esmann, MA d, Linnea Thorlacius, MD d, Bente Villumsen, MScEng e, Véronique del Marmol, MD, PhD f, Aude Nassif, MD g, Maia Delage, MD g, Thrasyvoulos Tzellos, MD, MSc, PhD h, Dagfinn Moseng, MD h, Øystein Grimstad, MD, PhD h, Haley Naik, MD, MHSc i, Robert Micheletti, MD j, Sandra Guilbault, BA k, Angie Parks Miller, BA k, l, Iltefat Hamzavi, MD l, Hessel van der Zee, MD, PhD m, Errol Prens, MD, PhD m, Naomi Kappe, MD m, Christine Ardon, MD m, Brian Kirby, MD, FRCPI n, Rosalind Hughes, MD, MRCPI n, Christos C. Zouboulis, MD, PhD o, Georgios Nikolakis, MD o, Falk G. Bechara, MD p, Lukasz Matusiak, MD, PhD q, Jacek Szepietowski, MD, PhD q, Amelia Glowaczewska, MD q, Saxon D. Smith, MBChB, MHL, PhD, FACD r, Noah Goldfarb, MD s, Steven Daveluy, MD t, Christina Avgoustou, MD u, Evangelos Giamarellos-Bourboulis, MD u, Steven Cohen, MD, MPH v, Yssra Soliman, BA v, Elena Gonzalez Brant, MD w, Oleg Akilov, MD, PhD w, Christopher Sayed, MD x, Jerry Tan, MD, FRCPC y, Afsaneh Alavi, MSc, MD, FRCPC z, Michelle A. Lowes, MD, PhD aa, José Carlos Pascual, MD bb, Hassan Riad, MBBcH, MS, MD cc, Shani Fisher, RN, MA dd, Arnon Cohen, MD, MPH, PhD ee, So Yeon Paek, MD ff, Barry Resnik, MD gg, Qiang Ju, MD hh, Lanqi Wang, MD hh, Andrew Strunk, MA a
, Erica Neuren, BA a, Denny Cha, BA a, Joslyn S. Kirby, MD, MS, Med b, John R. Ingram, MD c, Gregor B.E. Jemec, MD, DMSc d, Solveig Esmann, MA d, Linnea Thorlacius, MD d, Bente Villumsen, MScEng e, Véronique del Marmol, MD, PhD f, Aude Nassif, MD g, Maia Delage, MD g, Thrasyvoulos Tzellos, MD, MSc, PhD h, Dagfinn Moseng, MD h, Øystein Grimstad, MD, PhD h, Haley Naik, MD, MHSc i, Robert Micheletti, MD j, Sandra Guilbault, BA k, Angie Parks Miller, BA k, l, Iltefat Hamzavi, MD l, Hessel van der Zee, MD, PhD m, Errol Prens, MD, PhD m, Naomi Kappe, MD m, Christine Ardon, MD m, Brian Kirby, MD, FRCPI n, Rosalind Hughes, MD, MRCPI n, Christos C. Zouboulis, MD, PhD o, Georgios Nikolakis, MD o, Falk G. Bechara, MD p, Lukasz Matusiak, MD, PhD q, Jacek Szepietowski, MD, PhD q, Amelia Glowaczewska, MD q, Saxon D. Smith, MBChB, MHL, PhD, FACD r, Noah Goldfarb, MD s, Steven Daveluy, MD t, Christina Avgoustou, MD u, Evangelos Giamarellos-Bourboulis, MD u, Steven Cohen, MD, MPH v, Yssra Soliman, BA v, Elena Gonzalez Brant, MD w, Oleg Akilov, MD, PhD w, Christopher Sayed, MD x, Jerry Tan, MD, FRCPC y, Afsaneh Alavi, MSc, MD, FRCPC z, Michelle A. Lowes, MD, PhD aa, José Carlos Pascual, MD bb, Hassan Riad, MBBcH, MS, MD cc, Shani Fisher, RN, MA dd, Arnon Cohen, MD, MPH, PhD ee, So Yeon Paek, MD ff, Barry Resnik, MD gg, Qiang Ju, MD hh, Lanqi Wang, MD hh, Andrew Strunk, MA a a Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, New York
b Department of Dermatology, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania
c Institute of Infection and Immunity, University Hospital of Wales, Heath Park, Cardiff, United Kingdom
d Department of Dermatology, Zealand University Hospital, Roskilde, Denmark
e Danish HS Patients' Association, Copenhagen, Denmark
f Department of Dermatology, Erasme Hospital, Université Libre de Bruxelles, Brussels, Belgium
g Department of Dermatology, Institut Pasteur, Centre Medical, Paris, France
h Department of Dermatology, Faculty of Health Sciences, University Hospital of North Norway, Institute of Clinical Medicine, Arctic University, Tromsø, Norway
i Department of Dermatology, University of California, San Francisco, California
j Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
k Hope For HS, Detroit, Michigan
l Department of Dermatology, Henry Ford Hospital, Detroit, Michigan
m Department of Dermatology, Erasmus University Medical Center, Rotterdam, Netherlands
n Department of Dermatology, St. Vincent's University Hospital, Dublin, Ireland
o Departments of Dermatology, Venereology, Allergology, and Immunology, Dessau Medical Centre, Brandenburg Medical School Theodor Fontane, Dessau, Germany
p Department of Dermatology, Venereology and Allergology, St. Josef Hospital, Ruhr-University, Bochum, Germany
q Department of Dermatology, Venereology and Allergology, Wrocław Medical University, Wrocław, Poland
r Department of Dermatology, Northern Clinical School, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
s Department of Dermatology, University of Minnesota, Minneapolis, Minnesota
t Department of Dermatology, Wayne State University School of Medicine, Detroit, Michigan
u 4th Department of Internal Medicine, National and Kapodistrian University of Athens Medical School, Athens, Greece
v Division of Dermatology, Albert Einstein College of Medicine, Bronx, New York
w Department of Dermatology, University of Pittsburgh, Pittsburgh, Pennsylvania
x Department of Dermatology, University of North Carolina School of Medicine, Chapel Hill, North Carolina
y Department of Medicine, Western University, Windsor Campus, Windsor, Ontario, Canada
z Division of Dermatology, Women College Hospital, University of Toronto, Toronto, Ontario, Canada
aa Laboratory for Investigative Dermatology, The Rockefeller University, New York, New York
bb Department of Dermatology, Alicante University General Hospital, Alicante Institute for Health and Biomedical Research (ISABIAL-FISABIO Foundation), Alicante, Spain
cc Dermatology Department, Al Wakra Hospital, Hamad Medical Corporation, Doha, Qatar
dd Dermatology Department, Emek Medical Center, Afula, Israel
ee Department of Quality Measures and Research Chief Physician Office, General Management Clalit Health Services, Tel Aviv, Israel
ff Department of Dermatology, Baylor Scott & White Health, Dallas, Texas
gg Department of Dermatology and Cutaneous Surgery, Miller School of Medicine, Miami, Florida
hh Department of Dermatology, Renji Hospital School of Medicine, Shanghai Jiaotong University, Shanghai, China
∗Correspondence to: Amit Garg, MD, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, 1991 Marcus Ave, Ste 300, New Hyde Park, NY, 11042.Donald and Barbara Zucker School of Medicine at Hofstra/Northwell1991 Marcus Ave, Ste 300New Hyde ParkNY11042
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.
Le texte complet de cet article est disponible en PDF.Key words : acne inversa, care, comorbid conditions, diagnosis, Global VOICE, hidradenitis suppurativa, life impact, pain, patient, symptoms, treatment, unmet needs
Abbreviations used : CS-COUSIN, Global VOICE, HiSQOL, HISTORIC, HS, IDEOM, QOL
Plan
| Funding sources: None. |
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| 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. |
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| Reprints not available from the authors. |
© 2019
American Academy of Dermatology, Inc.. Publié par Elsevier Masson SAS. Tous droits réservés.
Vol 82 - N° 2
P. 366-376 - février 2020 Retour au numéro
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