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

被引：159

作者：

Garg, Amit ^{[1
]}

Neuren, Erica ^{[1
]}

Cha, Denny ^{[1
]}

Kirby, Joslyn S. ^{[2
]}

Ingram, John R. ^{[3
]}

Jemec, Gregor B. E. ^{[4
]}

Esmann, Solveig ^{[4
]}

Thorlacius, Linnea ^{[4
]}

Villumsen, Bente ^{[5
]}

del Marmol, Veronique ^{[6
]}

Nassif, Aude ^{[7
]}

Delage, Maia ^{[7
]}

Tzellos, Thrasyvoulos ^{[8
]}

Moseng, Dagfinn ^{[8
]}

Grimstad, Oystein ^{[8
]}

Naik, Haley ^{[9
]}

Micheletti, Robert ^{[10
]}

Guilbault, Sandra ^{[11
]}

Miller, Angie Parks ^{[11
,12
]}

Hamzavi, Iltefat ^{[12
]}

van der Zee, Hessel ^{[13
]}

Prens, Errol ^{[13
]}

Kappe, Naomi ^{[14
]}

Ardon, Christine ^{[13
]}

Kirby, Brian ^{[14
]}

Hughes, Rosalind ^{[14
]}

Zouboulis, Christos C. ^{[15
,16
,17
,18
]}

Nikolakis, Georgios ^{[15
,16
,17
,18
]}

Bechara, Falk G. ^{[19
]}

Matusiak, Lukasz ^{[20
]}

Szepietowski, Jacek ^{[20
]}

Glowaczewska, Amelia ^{[20
]}

Smith, Saxon D. ^{[21
]}

Goldfarb, Noah ^{[22
]}

Daveluy, Steven ^{[23
]}

Avgoustou, Christina ^{[24
]}

Giamarellos-Bourboulis, Evangelos ^{[24
]}

Cohen, Steven ^{[25
]}

Soliman, Yssra ^{[25
]}

Brant, Elena Gonzalez ^{[26
]}

Akilov, Oleg ^{[26
]}

Sayed, Christopher ^{[27
]}

Tan, Jerry ^{[28
]}

Alavi, Afsaneh ^{[29
]}

Lowes, Michelle A. ^{[30
]}

Carlos Pascual, Jose ^{[31
]}

Riad, Hassan ^{[32
]}

Fisher, Shani ^{[33
]}

Cohen, Arnon ^{[34
]}

Paek, So Yeon ^{[35
]}

机构：

[1] Donald & Barbara Zucker Sch Med Hofstra Northwell, Dept Dermatol, New Hyde Pk, NY USA

[2] Penn State Milton S Hershey Med Ctr, Dept Dermatol, Hershey, PA USA

[3] Univ Hosp Wales, Inst Infect & Immun, Cardiff, S Glam, Wales

[4] Zealand Univ Hosp, Dept Dermatol, Roskilde, Denmark

[5] Danish HS Patients Assoc, Copenhagen, Denmark

[6] Univ Libre Bruxelles, Erasme Hosp, Dept Dermatol, Brussels, Belgium

[7] Ctr Med, Inst Pasteur, Dept Dermatol, Paris, France

[8] Arctic Univ, Univ Hosp North Norway, Fac Hlth Sci, Inst Clin Med,Dept Dermatol, Tromso, Norway

[9] Univ Calif San Francisco, Dept Dermatol, San Francisco, CA USA

[10] Univ Penn, Dept Dermatol, Perelman Sch Med, Philadelphia, PA 19104 USA

[11] Hope HS, Detroit, MI USA

[12] Henry Ford Hosp, Dept Dermatol, Detroit, MI 48202 USA

[13] Erasmus Univ, Med Ctr, Dept Dermatol, Rotterdam, Netherlands

[14] St Vincents Univ Hosp, Dept Dermatol, Dublin, Ireland

[15] Brandenburg Med Sch Theodor Fontane, Dessau Med Ctr, Dept Dermatol, Dessau, Germany

[16] Brandenburg Med Sch Theodor Fontane, Dessau Med Ctr, Dept Venereol, Dessau, Germany

[17] Brandenburg Med Sch Theodor Fontane, Dessau Med Ctr, Dept Allergol, Dessau, Germany

[18] Brandenburg Med Sch Theodor Fontane, Dessau Med Ctr, Dept Immunol, Dessau, Germany

[19] Ruhr Univ, St Josef Hosp, Dept Dermatol Venereol & Allergol, Bochum, Germany

[20] Wroclaw Med Univ, Dept Dermatol Venereol & Allergol, Wroclaw, Poland

[21] Univ Sydney, Sydney Med Sch, Northern Clin Sch, Dept Dermatol, Sydney, NSW, Australia

[22] Univ Minnesota, Dept Dermatol, Minneapolis, MN 55455 USA

[23] Wayne State Univ, Sch Med, Dept Dermatol, Detroit, MI 48201 USA

[24] Natl & Kapodistrian Univ Athens, Dept Internal Med 4, Sch Med, Athens, Greece

[25] Albert Einstein Coll Med, Div Dermatol, Bronx, NY 10467 USA

[26] Univ Pittsburgh, Dept Dermatol, Pittsburgh, PA 15260 USA

[27] Univ N Carolina, Dept Dermatol, Sch Med, Chapel Hill, NC 27515 USA

[28] Western Univ, Dept Med, Windsor Campus, Windsor, ON, Canada

[29] Univ Toronto, Women Coll Hosp, Div Dermatol, Toronto, ON, Canada

[30] Rockefeller Univ, Invest Dermatol Lab, 1230 York Ave, New York, NY 10021 USA

[31] Alicante Univ, Gen Hosp, Dept Dermatol, Alicante Inst Hlth & Biomed Res ISABIAL FISABIO F, Alicante, Spain

[32] Hamad Med Corp, Al Wakra Hosp, Dept Dermatol, Doha, Qatar

[33] Emek Med Ctr, Dept Dermatol, Afula, Israel

[34] Gen Management Clalit Hlth Serv, Dept Qual Measures & Res, Chief Phys Off, Tel Aviv, Israel

[35] Baylor Scott & White Hlth, Dept Dermatol, Dallas, TX USA

[36] Miller Sch Med, Dept Dermatol & Cutaneous Surg, Miami, FL USA

[37] Shanghai Jiao Tong Univ, Renji Hosp, Sch Med, Dept Dermatol, Shanghai, Peoples R China

来源：

JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY | 2020年 / 82卷 / 02期

关键词：

acne inversa; care; comorbid conditions; diagnosis; Global VOICE; hidradenitis suppurativa; life impact; pain; patient; symptoms; treatment; unmet needs; QUALITY-OF-LIFE; INFLAMMATORY-BOWEL-DISEASE; METABOLIC SYNDROME; RETROSPECTIVE COHORT; PSYCHOSOCIAL IMPACT; REPORTED OUTCOMES; PREVALENCE; DEPRESSION; PAIN; ACNE;

D O I：

10.1016/j.jaad.2019.06.1301

中图分类号：

R75 [皮肤病学与性病学];

学科分类号：

100206 ;

摘要：

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 6 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.

引用

页码：366 / 376

页数：11

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Neuren, Erica
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Ingram, John R.
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