Skip to main content
Top
Published in: American Journal of Clinical Dermatology 4/2020

Open Access 01-08-2020 | Acne Inversa | Original Research Article

Baseline Characteristics from UNITE: An Observational, International, Multicentre Registry to Evaluate Hidradenitis Suppurativa (Acne Inversa) in Clinical Practice

Authors: Errol P. Prens, Aida M. Lugo-Somolinos, Amy S. Paller, Francisco Kerdel, Yinghui Duan, Henrique D. Teixeira, Michelle Longcore, Alexa B. Kimball

Published in: American Journal of Clinical Dermatology | Issue 4/2020

Login to get access

Abstract

Background

Hidradenitis suppurativa (HS), also known as acne inversa, is a recurring, painful, chronic, and sometimes disfiguring inflammatory skin disease.

Objectives

Our objective was to report the baseline clinical characteristics, natural history, and associated outcomes of patients with HS from the ongoing, prospective, non-interventional UNITE registry that is collecting data regarding the natural history and associated outcomes of HS.

Methods

Patients with inflammatory HS lesions were enrolled, including adolescents (aged 12 to < 18 years) and adults (aged ≥ 18 years). None had participated in previous or current originator-adalimumab studies/registries. Patients received treatment consistent with site-specific, routine clinical practice. HS disease status was assessed by HS lesions and disease flare; treatment and outcomes data were collected at enrolment and every 6 months for ≤ 4 years.

Results

Enrolment (N = 594; 89.1% adults; 10.9% adolescents) occurred from 29 October 2013 to 29 December 2015 at 73 sites in 12 countries. At baseline, the majority were female (69.7%) and White (81.2%), had moderate-to-severe disease (Hurley stage II or III; 93.3%), and had undergone prior procedures/surgery for HS (68.7%). In total, 61.6% of adults and 49.2% of adolescents were obese; 40.2% of patients reported current tobacco use. Scarring due to lesions occurred in 91.2% of patients. The prevalence of comorbidities of interest was as follows: depression (13.3%), other psychiatric disorders (9.6%), inflammatory bowel disease (2.7%), diabetes (9.1%), and polycystic ovary syndrome (5.2%).

Conclusions

In this population from the UNITE HS registry, obesity and smoking were common, and disease burden was high, manifesting as multiple lesions, scarring, surgical history, and considerable comorbidities.
Appendix
Available only for authorised users
Literature
1.
go back to reference Jemec GB. Clinical practice. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158–64.PubMed Jemec GB. Clinical practice. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158–64.PubMed
2.
go back to reference van der Zee HH, Jemec GB. New insights into the diagnosis of hidradenitis suppurativa: clinical presentations and phenotypes. J Am Acad Dermatol. 2015;73(5 Suppl 1):S23–6.PubMed van der Zee HH, Jemec GB. New insights into the diagnosis of hidradenitis suppurativa: clinical presentations and phenotypes. J Am Acad Dermatol. 2015;73(5 Suppl 1):S23–6.PubMed
3.
go back to reference Garg A, Kirby JS, Lavian J, Lin G, Strunk A. Sex- and age-adjusted population analysis of prevalence estimates for hidradenitis suppurativa in the United States. JAMA Dermatol. 2017;153(8):760–4.PubMedPubMedCentral Garg A, Kirby JS, Lavian J, Lin G, Strunk A. Sex- and age-adjusted population analysis of prevalence estimates for hidradenitis suppurativa in the United States. JAMA Dermatol. 2017;153(8):760–4.PubMedPubMedCentral
4.
go back to reference Cosmatos I, Matcho A, Weinstein R, Montgomery MO, Stang P. Analysis of patient claims data to determine the prevalence of hidradenitis suppurativa in the United States. J Am Acad Dermatol. 2013;68(3):412–9.PubMed Cosmatos I, Matcho A, Weinstein R, Montgomery MO, Stang P. Analysis of patient claims data to determine the prevalence of hidradenitis suppurativa in the United States. J Am Acad Dermatol. 2013;68(3):412–9.PubMed
5.
go back to reference Palmer RA, Keefe M. Early-onset hidradenitis suppurativa. Clin Exp Dermatol. 2001;26(6):501–3.PubMed Palmer RA, Keefe M. Early-onset hidradenitis suppurativa. Clin Exp Dermatol. 2001;26(6):501–3.PubMed
6.
go back to reference Matusiak L, Bieniek A, Szepietowski JC. Hidradenitis suppurativa and associated factors: still unsolved problems. J Am Acad Dermatol. 2009;61(2):362–5.PubMed Matusiak L, Bieniek A, Szepietowski JC. Hidradenitis suppurativa and associated factors: still unsolved problems. J Am Acad Dermatol. 2009;61(2):362–5.PubMed
7.
go back to reference Revuz JE, Canoui-Poitrine F, Wolkenstein P, Viallette C, Gabison G, Pouget F, et al. Prevalence and factors associated with hidradenitis suppurativa: results from two case–control studies. J Am Acad Dermatol. 2008;59(4):596–601.PubMed Revuz JE, Canoui-Poitrine F, Wolkenstein P, Viallette C, Gabison G, Pouget F, et al. Prevalence and factors associated with hidradenitis suppurativa: results from two case–control studies. J Am Acad Dermatol. 2008;59(4):596–601.PubMed
8.
go back to reference Jemec GB, Heidenheim M, Nielsen NH. The prevalence of hidradenitis suppurativa and its potential precursor lesions. J Am Acad Dermatol. 1996;35(2 Pt 1):191–4.PubMed Jemec GB, Heidenheim M, Nielsen NH. The prevalence of hidradenitis suppurativa and its potential precursor lesions. J Am Acad Dermatol. 1996;35(2 Pt 1):191–4.PubMed
9.
go back to reference Dufour DN, Emtestam L, Jemec GB. Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease. Postgrad Med J. 2014;90(1062):216–21.PubMedPubMedCentral Dufour DN, Emtestam L, Jemec GB. Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease. Postgrad Med J. 2014;90(1062):216–21.PubMedPubMedCentral
10.
go back to reference Saunte DM, Boer J, Stratigos A, Szepietowski JC, Hamzavi I, Kim KH, et al. Diagnostic delay in hidradenitis suppurativa is a global problem. Br J Dermatol. 2015;173(6):1546–9.PubMed Saunte DM, Boer J, Stratigos A, Szepietowski JC, Hamzavi I, Kim KH, et al. Diagnostic delay in hidradenitis suppurativa is a global problem. Br J Dermatol. 2015;173(6):1546–9.PubMed
11.
go back to reference van der Zee HH, Laman JD, Boer J, Prens EP. Hidradenitis suppurativa: viewpoint on clinical phenotyping, pathogenesis and novel treatments. Exp Dermatol. 2012;21(10):735–9.PubMed van der Zee HH, Laman JD, Boer J, Prens EP. Hidradenitis suppurativa: viewpoint on clinical phenotyping, pathogenesis and novel treatments. Exp Dermatol. 2012;21(10):735–9.PubMed
12.
go back to reference Alikhan A, Lynch PJ, Eisen DB. Hidradenitis suppurativa: a comprehensive review. J Am Acad Dermatol. 2009;60(4):539–61.PubMed Alikhan A, Lynch PJ, Eisen DB. Hidradenitis suppurativa: a comprehensive review. J Am Acad Dermatol. 2009;60(4):539–61.PubMed
13.
go back to reference Giamarellos-Bourboulis EJ, Antonopoulou A, Petropoulou C, Mouktaroudi M, Spyridaki E, Baziaka F, et al. Altered innate and adaptive immune responses in patients with hidradenitis suppurativa. Br J Dermatol. 2007;156(1):51–6.PubMed Giamarellos-Bourboulis EJ, Antonopoulou A, Petropoulou C, Mouktaroudi M, Spyridaki E, Baziaka F, et al. Altered innate and adaptive immune responses in patients with hidradenitis suppurativa. Br J Dermatol. 2007;156(1):51–6.PubMed
14.
go back to reference Scheinfeld NS. A case of dissecting cellulitis and a review of the literature. Dermatol Online J. 2003;9(1):8.PubMed Scheinfeld NS. A case of dissecting cellulitis and a review of the literature. Dermatol Online J. 2003;9(1):8.PubMed
15.
go back to reference Wolkenstein P, Loundou A, Barrau K, Auquier P, Revuz J. Quality of life impairment in hidradenitis suppurativa: a study of 61 cases. J Am Acad Dermatol. 2007;56(4):621–3.PubMed Wolkenstein P, Loundou A, Barrau K, Auquier P, Revuz J. Quality of life impairment in hidradenitis suppurativa: a study of 61 cases. J Am Acad Dermatol. 2007;56(4):621–3.PubMed
16.
go back to reference Esmann S, Jemec GB. Psychosocial impact of hidradenitis suppurativa: a qualitative study. Acta Derm Venereol. 2011;91(3):328–32.PubMed Esmann S, Jemec GB. Psychosocial impact of hidradenitis suppurativa: a qualitative study. Acta Derm Venereol. 2011;91(3):328–32.PubMed
17.
go back to reference Matusiak L, Bieniek A, Szepietowski JC. Psychophysical aspects of hidradenitis suppurativa. Acta Derm Venereol. 2010;90(3):264–8.PubMed Matusiak L, Bieniek A, Szepietowski JC. Psychophysical aspects of hidradenitis suppurativa. Acta Derm Venereol. 2010;90(3):264–8.PubMed
18.
go back to reference Onderdijk AJ, van der Zee HH, Esmann S, Lophaven S, Dufour DN, Jemec GB, et al. Depression in patients with hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2013;27(4):473–8.PubMed Onderdijk AJ, van der Zee HH, Esmann S, Lophaven S, Dufour DN, Jemec GB, et al. Depression in patients with hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2013;27(4):473–8.PubMed
19.
go back to reference Kirby JS. Qualitative study shows disease damage matters to patients with hidradenitis suppurativa. J Am Acad Dermatol. 2016;74(6):1269–70.PubMedPubMedCentral Kirby JS. Qualitative study shows disease damage matters to patients with hidradenitis suppurativa. J Am Acad Dermatol. 2016;74(6):1269–70.PubMedPubMedCentral
20.
go back to reference Menter A. Recognizing and managing comorbidities and complications in hidradenitis suppurativa. Semin Cutan Med Surg. 2014;33(3 Suppl):S54–6.PubMed Menter A. Recognizing and managing comorbidities and complications in hidradenitis suppurativa. Semin Cutan Med Surg. 2014;33(3 Suppl):S54–6.PubMed
21.
go back to reference Canoui-Poitrine F, Revuz JE, Wolkenstein P, Viallette C, Gabison G, Pouget F, et al. Clinical characteristics of a series of 302 French patients with hidradenitis suppurativa, with an analysis of factors associated with disease severity. J Am Acad Dermatol. 2009;61(1):51–7.PubMed Canoui-Poitrine F, Revuz JE, Wolkenstein P, Viallette C, Gabison G, Pouget F, et al. Clinical characteristics of a series of 302 French patients with hidradenitis suppurativa, with an analysis of factors associated with disease severity. J Am Acad Dermatol. 2009;61(1):51–7.PubMed
22.
go back to reference Shlyankevich J, Chen AJ, Kim GE, Kimball AB. Hidradenitis suppurativa is a systemic disease with substantial comorbidity burden: a chart-verified case–control analysis. J Am Acad Dermatol. 2014;71(6):1144–50.PubMed Shlyankevich J, Chen AJ, Kim GE, Kimball AB. Hidradenitis suppurativa is a systemic disease with substantial comorbidity burden: a chart-verified case–control analysis. J Am Acad Dermatol. 2014;71(6):1144–50.PubMed
23.
go back to reference Deckers IE, Prens EP. An update on medical treatment options for hidradenitis suppurativa. Drugs. 2016;76(2):215–29.PubMed Deckers IE, Prens EP. An update on medical treatment options for hidradenitis suppurativa. Drugs. 2016;76(2):215–29.PubMed
24.
go back to reference Zouboulis CC, Desai N, Emtestam L, Hunger RE, Ioannides D, Juhasz I, et al. European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa. J Eur Acad Dermatol Venereol. 2015;30(29):619–44. Zouboulis CC, Desai N, Emtestam L, Hunger RE, Ioannides D, Juhasz I, et al. European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa. J Eur Acad Dermatol Venereol. 2015;30(29):619–44.
25.
go back to reference Gulliver W, Zouboulis CC, Prens E, Jemec GB, Tzellos T. Evidence-based approach to the treatment of hidradenitis suppurativa/acne inversa, based on the European guidelines for hidradenitis suppurativa. Rev Endocr Metab Disord. 2016;17(3):343–51.PubMedPubMedCentral Gulliver W, Zouboulis CC, Prens E, Jemec GB, Tzellos T. Evidence-based approach to the treatment of hidradenitis suppurativa/acne inversa, based on the European guidelines for hidradenitis suppurativa. Rev Endocr Metab Disord. 2016;17(3):343–51.PubMedPubMedCentral
26.
go back to reference Ellis LZ. Hidradenitis suppurativa: surgical and other management techniques. Dermatol Surg. 2012;38(4):517–36.PubMed Ellis LZ. Hidradenitis suppurativa: surgical and other management techniques. Dermatol Surg. 2012;38(4):517–36.PubMed
27.
go back to reference Kimball AB, Crowley JJ, Papp K, Calimlim B, Duan Y, Fleischer AB, et al. Baseline patient-reported outcomes from UNITE: an observational, international, multicentre registry to evaluate hidradenitis suppurativa in clinical practice. J Eur Acad Dermatol Venereol. 2019. https://doi.org/10.1111/jdv.16132.CrossRefPubMed Kimball AB, Crowley JJ, Papp K, Calimlim B, Duan Y, Fleischer AB, et al. Baseline patient-reported outcomes from UNITE: an observational, international, multicentre registry to evaluate hidradenitis suppurativa in clinical practice. J Eur Acad Dermatol Venereol. 2019. https://​doi.​org/​10.​1111/​jdv.​16132.CrossRefPubMed
28.
go back to reference Canoui-Poitrine F, Le Thuaut A, Revuz JE, Viallette C, Gabison G, Poli F, et al. Identification of three hidradenitis suppurativa phenotypes: latent class analysis of a cross-sectional study. J Investig Dermatol. 2013;133(6):1506–11.PubMed Canoui-Poitrine F, Le Thuaut A, Revuz JE, Viallette C, Gabison G, Poli F, et al. Identification of three hidradenitis suppurativa phenotypes: latent class analysis of a cross-sectional study. J Investig Dermatol. 2013;133(6):1506–11.PubMed
29.
go back to reference Vazquez BG, Alikhan A, Weaver AL, Wetter DA, Davis MD. Incidence of hidradenitis suppurativa and associated factors: a population-based study of Olmsted county, Minnesota. J Investig Dermatol. 2013;133(1):97–103.PubMed Vazquez BG, Alikhan A, Weaver AL, Wetter DA, Davis MD. Incidence of hidradenitis suppurativa and associated factors: a population-based study of Olmsted county, Minnesota. J Investig Dermatol. 2013;133(1):97–103.PubMed
30.
go back to reference Pink AE, Simpson MA, Desai N, Dafou D, Hills A, Mortimer P, et al. Mutations in the gamma-secretase genes NCSTN, PSENEN, and PSEN1 underlie rare forms of hidradenitis suppurativa (acne inversa). J Investig Dermatol. 2012;132(10):2459–61.PubMed Pink AE, Simpson MA, Desai N, Dafou D, Hills A, Mortimer P, et al. Mutations in the gamma-secretase genes NCSTN, PSENEN, and PSEN1 underlie rare forms of hidradenitis suppurativa (acne inversa). J Investig Dermatol. 2012;132(10):2459–61.PubMed
31.
go back to reference Revuz J. Hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2009;23(9):985–98.PubMed Revuz J. Hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2009;23(9):985–98.PubMed
32.
go back to reference Konig A, Lehmann C, Rompel R, Happle R. Cigarette smoking as a triggering factor of hidradenitis suppurativa. Dermatology. 1999;198(3):261–4.PubMed Konig A, Lehmann C, Rompel R, Happle R. Cigarette smoking as a triggering factor of hidradenitis suppurativa. Dermatology. 1999;198(3):261–4.PubMed
33.
go back to reference Sartorius K, Emtestam L, Jemec GB, Lapins J. Objective scoring of hidradenitis suppurativa reflecting the role of tobacco smoking and obesity. Br J Dermatol. 2009;161(4):831–9.PubMed Sartorius K, Emtestam L, Jemec GB, Lapins J. Objective scoring of hidradenitis suppurativa reflecting the role of tobacco smoking and obesity. Br J Dermatol. 2009;161(4):831–9.PubMed
34.
go back to reference Tzellos T, Zouboulis CC, Gulliver W, Cohen AD, Wolkenstein P, Jemec GB. Cardiovascular disease risk factors in patients with hidradenitis suppurativa: a systematic review and meta-analysis of observational studies. Br J Dermatol. 2015;173(5):1142–55.PubMed Tzellos T, Zouboulis CC, Gulliver W, Cohen AD, Wolkenstein P, Jemec GB. Cardiovascular disease risk factors in patients with hidradenitis suppurativa: a systematic review and meta-analysis of observational studies. Br J Dermatol. 2015;173(5):1142–55.PubMed
35.
go back to reference Egeberg A, Jemec GBE, Kimball AB, Bachelez H, Gislason GH, Thyssen JP, et al. Prevalence and risk of inflammatory bowel disease in patients with hidradenitis suppurativa. J Investig Dermatol. 2017;137(5):1060–4.PubMed Egeberg A, Jemec GBE, Kimball AB, Bachelez H, Gislason GH, Thyssen JP, et al. Prevalence and risk of inflammatory bowel disease in patients with hidradenitis suppurativa. J Investig Dermatol. 2017;137(5):1060–4.PubMed
36.
go back to reference Shalom G, Freud T, Ben Yakov G, Khoury R, Dreiher J, Vardy DA, et al. Hidradenitis suppurativa and inflammatory bowel disease: a cross-sectional study of 3,207 patients. J Investig Dermatol. 2016;136(8):1716–8.PubMed Shalom G, Freud T, Ben Yakov G, Khoury R, Dreiher J, Vardy DA, et al. Hidradenitis suppurativa and inflammatory bowel disease: a cross-sectional study of 3,207 patients. J Investig Dermatol. 2016;136(8):1716–8.PubMed
37.
go back to reference Garg A, Hundal J, Strunk A. Overall and subgroup prevalence of crohn disease among patients with hidradenitis suppurativa: a population-based analysis in the United States. JAMA Dermatol. 2018;154(7):814–8.PubMedPubMedCentral Garg A, Hundal J, Strunk A. Overall and subgroup prevalence of crohn disease among patients with hidradenitis suppurativa: a population-based analysis in the United States. JAMA Dermatol. 2018;154(7):814–8.PubMedPubMedCentral
38.
go back to reference Martorell A, Garcia FJ, Jimenez-Gallo D, Pascual JC, Pereyra-Rodriguez J, Salgado L, et al. Update on hidradenitis suppurative (part II): treatment. Actas Dermosifiliogr. 2015;106(9):716–24.PubMed Martorell A, Garcia FJ, Jimenez-Gallo D, Pascual JC, Pereyra-Rodriguez J, Salgado L, et al. Update on hidradenitis suppurative (part II): treatment. Actas Dermosifiliogr. 2015;106(9):716–24.PubMed
39.
go back to reference Kurek A, Johanne Peters EM, Sabat R, Sterry W, Schneider-Burrus S. Depression is a frequent co-morbidity in patients with acne inversa. J Dtsch Dermatol Ges. 2013;11(8):743–50.PubMed Kurek A, Johanne Peters EM, Sabat R, Sterry W, Schneider-Burrus S. Depression is a frequent co-morbidity in patients with acne inversa. J Dtsch Dermatol Ges. 2013;11(8):743–50.PubMed
40.
go back to reference Shavit E, Dreiher J, Freud T, Halevy S, Vinker S, Cohen AD. Psychiatric comorbidities in 3207 patients with hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2015;29(2):371–6.PubMed Shavit E, Dreiher J, Freud T, Halevy S, Vinker S, Cohen AD. Psychiatric comorbidities in 3207 patients with hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2015;29(2):371–6.PubMed
41.
go back to reference Hammer GP, du Prel JB, Blettner M. Avoiding bias in observational studies: part 8 in a series of articles on evaluation of scientific publications. Dtsch Arztebl Int. 2009;106(41):664–8.PubMedPubMedCentral Hammer GP, du Prel JB, Blettner M. Avoiding bias in observational studies: part 8 in a series of articles on evaluation of scientific publications. Dtsch Arztebl Int. 2009;106(41):664–8.PubMedPubMedCentral
42.
go back to reference Horvath B, Janse IC, Blok JL, Driessen RJ, Boer J, Mekkes JR, et al. Hurley staging refined: a proposal by the Dutch Hidradenitis Suppurativa Expert Group. Acta Derm Venereol. 2017;97(3):412–3.PubMed Horvath B, Janse IC, Blok JL, Driessen RJ, Boer J, Mekkes JR, et al. Hurley staging refined: a proposal by the Dutch Hidradenitis Suppurativa Expert Group. Acta Derm Venereol. 2017;97(3):412–3.PubMed
43.
go back to reference Zouboulis CC, Tzellos T, Kyrgidis A, Jemec GBE, Bechara FG, Giamarellos-Bourboulis EJ, et al. Development and validation of the International Hidradenitis Suppurativa Severity Score System (IHS4), a novel dynamic scoring system to assess HS severity. Br J Dermatol. 2017;177(5):1401–9.PubMed Zouboulis CC, Tzellos T, Kyrgidis A, Jemec GBE, Bechara FG, Giamarellos-Bourboulis EJ, et al. Development and validation of the International Hidradenitis Suppurativa Severity Score System (IHS4), a novel dynamic scoring system to assess HS severity. Br J Dermatol. 2017;177(5):1401–9.PubMed
Metadata
Title
Baseline Characteristics from UNITE: An Observational, International, Multicentre Registry to Evaluate Hidradenitis Suppurativa (Acne Inversa) in Clinical Practice
Authors
Errol P. Prens
Aida M. Lugo-Somolinos
Amy S. Paller
Francisco Kerdel
Yinghui Duan
Henrique D. Teixeira
Michelle Longcore
Alexa B. Kimball
Publication date
01-08-2020
Publisher
Springer International Publishing
Keyword
Acne Inversa
Published in
American Journal of Clinical Dermatology / Issue 4/2020
Print ISSN: 1175-0561
Electronic ISSN: 1179-1888
DOI
https://doi.org/10.1007/s40257-020-00504-4

Other articles of this Issue 4/2020

American Journal of Clinical Dermatology 4/2020 Go to the issue