Background: Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition substantially impacting patients’ quality of life; the pathogenesis remains unclear, and treatment is complex and not yet standardized. Observational data are increasingly being used to evaluate therapeutics in “real-life” interventions, and the development of e-cohorts is offering new tools for epidemiological studies at the population level. Objective: The aim of this study was to describe the clinical characteristics and treatment history of HS participants in the Community of Patients for Research (ComPaRe) cohort and to compare these to other cohorts. Methods: We performed a cross-sectional study of the baseline data of HS participants in ComPaRe, an e-cohort of patients with chronic diseases. Data were collected using patient-reported questionnaires about clinical-dem­ographic aspects, quality of life, and treatment history. Results: A total of 396 participants (339 females, 57 males) were included (mean age 38 years); 83 (21%) had a family history of HS, 227 (57.3%) were current smokers, and 241 (60.9%) were overweight or obese. Most of the participants declared a Hurley stage II (n = 263, 66.4%) or III (n = 76, 20.3%). The breast was more frequently affected in women than men (37.5 vs. 5.3%, p < 0.0001), whereas the dorsal region was more frequently affected in men (39.5 vs. 10.9%, p < 0.0001). Increased disease stage was associated with obesity (25.9 vs. 33.8 vs. 51.3%, p = 0.02) and some HS localizations (genital [p < 0.005], pubis [p < 0.007], gluteal fold [p = 0.02], and groin [p < 0.0001]). The most frequently prescribed treatments were oral antibiotics (n = 362, 91.4%), especially amoxicillin-clavulanic acid and cyclins. Less than 10% of participants received biologics. Most of these results were consistent with previously published cohorts. Conclusion: Recruitment of participants by such a web platform can be a faster way to get relevant scientific data for a wide variety of patients that could be used for epidemiological studies and to evaluate therapeutics in “real-life” interventions.

1.
Jemec
GB
.
Clinical practice. Hidradenitis suppurativa
.
N Engl J Med
.
2012
Jan
;
366
(
2
):
158
64
.
[PubMed]
0028-4793
2.
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
Oct
;
59
(
4
):
596
601
.
[PubMed]
0190-9622
3.
Ingram
JR
,
Abbott
R
,
Ghazavi
M
,
Alexandroff
AB
,
McPhee
M
,
Burton
T
, et al.
.
The Hidradenitis Suppurativa Priority Setting Partnership
.
Br J Dermatol
.
2014
Dec
;
171
(
6
):
1422
7
.
[PubMed]
0007-0963
4.
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
Dec
;
173
(
6
):
1546
9
.
[PubMed]
0007-0963
5.
Pink
AE
,
Simpson
MA
,
Desai
N
,
Trembath
RC
,
Barker
JN
.
γ-Secretase mutations in hidradenitis suppurativa: new insights into disease pathogenesis
.
J Invest Dermatol
.
2013
Mar
;
133
(
3
):
601
7
.
[PubMed]
0022-202X
6.
Ingram
JR
.
The Genetics of Hidradenitis Suppurativa
.
Dermatol Clin
.
2016
Jan
;
34
(
1
):
23
8
.
[PubMed]
0733-8635
7.
Harrison
BJ
,
Read
GF
,
Hughes
LE
.
Endocrine basis for the clinical presentation of hidradenitis suppurativa
.
Br J Surg
.
1988
Oct
;
75
(
10
):
972
5
.
[PubMed]
0007-1323
8.
Mortimer
PS
,
Dawber
RP
,
Gales
MA
,
Moore
RA
.
Mediation of hidradenitis suppurativa by androgens
.
Br Med J (Clin Res Ed)
.
1986
Jan
;
292
(
6515
):
245
8
.
[PubMed]
0267-0623
9.
Matusiak
Ł
,
Bieniek
A
,
Szepietowski
JC
.
Bacteriology of hidradenitis suppurativa - which antibiotics are the treatment of choice
.
Acta Derm Venereol
.
2014
Nov
;
94
(
6
):
699
702
.
[PubMed]
0001-5555
10.
Nazary
M
,
van der Zee
HH
,
Prens
EP
,
Folkerts
G
,
Boer
J
.
Pathogenesis and pharmacotherapy of Hidradenitis suppurativa
.
Eur J Pharmacol
.
2011
Dec
;
672
(
1-3
):
1
8
.
[PubMed]
0014-2999
11.
Hessam
S
,
Sand
M
,
Georgas
D
,
Anders
A
,
Bechara
FG
.
Microbial Profile and Antimicrobial Susceptibility of Bacteria Found in Inflammatory Hidradenitis Suppurativa Lesions
.
Skin Pharmacol Physiol
.
2016
;
29
(
3
):
161
7
.
[PubMed]
1660-5527
12.
Assan
F
,
Gottlieb
J
,
Tubach
F
,
Lebbah
S
,
Guigue
N
,
Hickman
G
, et al.
.
Anti-Saccharomyces cerevisiae IgG and IgA antibodies are associated with systemic inflammation and advanced disease in hidradenitis suppurativa
.
J Allergy Clin Immunol
.
2020
Aug
;
146
(
2
):
452
455.e5
.
[PubMed]
0091-6749
13.
Kromann
CB
,
Ibler
KS
,
Kristiansen
VB
,
Jemec
GB
.
The influence of body weight on the prevalence and severity of hidradenitis suppurativa
.
Acta Derm Venereol
.
2014
Sep
;
94
(
5
):
553
7
.
[PubMed]
0001-5555
14.
Kromann
CB
,
Deckers
IE
,
Esmann
S
,
Boer
J
,
Prens
EP
,
Jemec
GB
.
Risk factors, clinical course and long-term prognosis in hidradenitis suppurativa: a cross-sectional study
.
Br J Dermatol
.
2014
Oct
;
171
(
4
):
819
24
.
[PubMed]
0007-0963
15.
Patel
ZS
,
Hoffman
LK
,
Buse
DC
,
Grinberg
AS
,
Afifi
L
,
Cohen
SR
, et al.
.
Pain, Psychological Comorbidities, Disability, and Impaired Quality of Life in Hidradenitis Suppurativa [corrected]
.
Curr Pain Headache Rep
.
2017
Nov
;
21
(
12
):
49
.
[PubMed]
1531-3433
16.
Kohorst
JJ
,
Kimball
AB
,
Davis
MD
.
Systemic associations of hidradenitis suppurativa
.
J Am Acad Dermatol
.
2015
Nov
;
73
(
5
Suppl 1
):
S27
35
.
[PubMed]
0190-9622
17.
Gold
DA
,
Reeder
VJ
,
Mahan
MG
,
Hamzavi
IH
.
The prevalence of metabolic syndrome in patients with hidradenitis suppurativa
.
J Am Acad Dermatol
.
2014
Apr
;
70
(
4
):
699
703
.
[PubMed]
0190-9622
18.
van der Zee
HH
,
de Winter
K
,
van der Woude
CJ
,
Prens
EP
.
The prevalence of hidradenitis suppurativa in 1093 patients with inflammatory bowel disease
.
Br J Dermatol
.
2014
Sep
;
171
(
3
):
673
5
.
[PubMed]
0007-0963
19.
Schneider-Burrus
S
,
Witte-Haendel
E
,
Christou
D
,
Rigoni
B
,
Sabat
R
,
Diederichs
G
.
High Prevalence of Back Pain and Axial Spondyloarthropathy in Patients with Hidradenitis Suppurativa
.
Dermatology
.
2016
;
232
(
5
):
606
12
.
[PubMed]
1018-8665
20.
Zouboulis
CC
,
Bechara
FG
,
Dickinson-Blok
JL
,
Gulliver
W
,
Horváth
B
,
Hughes
R
, et al.
.
Hidradenitis suppurativa/acne inversa: a practical framework for treatment optimization - systematic review and recommendations from the HS ALLIANCE working group
.
J Eur Acad Dermatol Venereol
.
2019
Jan
;
33
(
1
):
19
31
.
[PubMed]
0926-9959
21.
Alikhan
A
,
Sayed
C
,
Alavi
A
,
Alhusayen
R
,
Brassard
A
,
Burkhart
C
, et al.
.
North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part I: Diagnosis, evaluation, and the use of complementary and procedural management
.
J Am Acad Dermatol
.
2019
Jul
;
81
(
1
):
76
90
.
[PubMed]
0190-9622
22.
Grimstad
Ø
,
Tzellos
T
,
Dufour
DN
,
Bremnes
Ø
,
Skoie
IM
,
Snekvik
I
, et al.
.
Evaluation of medical and surgical treatments for hidradenitis suppurativa using real-life data from the Scandinavian registry (HISREG)
.
J Eur Acad Dermatol Venereol
.
2019
Jun
;
33
(
6
):
1164
71
.
[PubMed]
0926-9959
23.
Eysenbach
G
.
Infodemiology and infoveillance: framework for an emerging set of public health informatics methods to analyze search, communication and publication behavior on the Internet
.
J Med Internet Res
.
2009
Mar
;
11
(
1
):
e11
.
[PubMed]
1438-8871
24.
International Telecommunication Union
. (
2011
) Measuring the information society 2011. 157 p. Available: http://www.itu.int/net/pressoffice/backgrounders/general/pdf/5.pdf. Accessed 29 June 2012.
25.
Salathé
M
,
Bengtsson
L
,
Bodnar
TJ
,
Brewer
DD
,
Brownstein
JS
,
Buckee
C
, et al.
.
Digital epidemiology
.
PLOS Comput Biol
.
2012
;
8
(
7
):
e1002616
.
[PubMed]
1553-734X
26.
Ekman
A
,
Dickman
PW
,
Klint
A
,
Weiderpass
E
,
Litton
JE
.
Feasibility of using web-based questionnaires in large population-based epidemiological studies
.
Eur J Epidemiol
.
2006
;
21
(
2
):
103
11
.
[PubMed]
0393-2990
27.
Hercberg
S
,
Castetbon
K
,
Czernichow
S
,
Malon
A
,
Mejean
C
,
Kesse
E
, et al.
.
The Nutrinet-Santé Study: a web-based prospective study on the relationship between nutrition and health and determinants of dietary patterns and nutritional status
.
BMC Public Health
.
2010
May
;
10
(
1
):
242
.
[PubMed]
1471-2458
28.
Smith
AB
,
King
M
,
Butow
P
,
Olver
I
.
A comparison of data quality and practicality of online versus postal questionnaires in a sample of testicular cancer survivors
.
Psychooncology
.
2013
Jan
;
22
(
1
):
233
7
.
[PubMed]
1057-9249
29.
Finlay
AY
,
Khan
GK
.
Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use
.
Clin Exp Dermatol
.
1994
May
;
19
(
3
):
210
6
.
[PubMed]
0307-6938
30.
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
Jul
;
61
(
1
):
51
7
.
[PubMed]
0190-9622
31.
Shalom
G
,
Freud
T
,
Harman-Boehm
I
,
Polishchuk
I
,
Cohen
AD
.
Hidradenitis suppurativa and metabolic syndrome: a comparative cross-sectional study of 3207 patients
.
Br J Dermatol
.
2015
Aug
;
173
(
2
):
464
70
.
[PubMed]
0007-0963
32.
Schrader
AM
,
Deckers
IE
,
van der Zee
HH
,
Boer
J
,
Prens
EP
.
Hidradenitis suppurativa: a retrospective study of 846 Dutch patients to identify factors associated with disease severity
.
J Am Acad Dermatol
.
2014
Sep
;
71
(
3
):
460
7
.
[PubMed]
0190-9622
33.
Vinding
GR
,
Miller
IM
,
Zarchi
K
,
Ibler
KS
,
Ellervik
C
,
Jemec
GB
.
The prevalence of inverse recurrent suppuration: a population-based study of possible hidradenitis suppurativa
.
Br J Dermatol
.
2014
Apr
;
170
(
4
):
884
9
.
[PubMed]
0007-0963
34.
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 Invest Dermatol
.
2013
Jan
;
133
(
1
):
97
103
.
[PubMed]
0022-202X
35.
Miller
IM
,
Ellervik
C
,
Vinding
GR
,
Zarchi
K
,
Ibler
KS
,
Knudsen
KM
, et al.
.
Association of metabolic syndrome and hidradenitis suppurativa
.
JAMA Dermatol
.
2014
Dec
;
150
(
12
):
1273
80
.
[PubMed]
2168-6068
36.
Alikhan
A
,
Lynch
PJ
,
Eisen
DB
.
Hidradenitis suppurativa: a comprehensive review
.
J Am Acad Dermatol
.
2009
Apr
;
60
(
4
):
539
61
.
[PubMed]
0190-9622
37.
Kesse-Guyot
E
,
Assman
K
,
Andreeva
V
,
Castetbon
K
,
Méjean
C
, et al.
.
Lessons Learned From Methodological Validation Research in E-Epidemiology
.
JMIR Public Health Surveill
.
2016
Oct
;
2
(
2
):
e160
. 2369-2960
38.
Loget
J
,
Saint-Martin
C
,
Guillem
P
,
Kanagaratnam
L
,
Becherel
PA
,
Nassif
A
, et al.;
sous l’égide de « ResoVerneil »
.
[Misdiagnosis of hidradenitis suppurativa continues to be a major issue. The R-ENS Verneuil study]
.
Ann Dermatol Venereol
.
2018
May
;
145
(
5
):
331
8
.
[PubMed]
0151-9638
39.
Clerc
H
,
Tavernier
E
,
Giraudeau
B
,
Bourdais-Sallot
A
,
Samimi
M
,
Abdo
I
, et al.
.
Understanding the long diagnostic delay for hidradenitis suppurativa: a national survey among French general practitioners
.
Eur J Dermatol
.
2019
Feb
;
29
(
1
):
97
9
.
[PubMed]
1952-4013
40.
Deckers
IE
,
Janse
IC
,
van der Zee
HH
,
Nijsten
T
,
Boer
J
,
Horváth
B
, et al.
.
Hidradenitis suppurativa (HS) is associated with low socioeconomic status (SES): A cross-sectional reference study
.
J Am Acad Dermatol
.
2016
Oct
;
75
(
4
):
755
759.e1
.
[PubMed]
0190-9622
41.
Santos
JV
,
Lisboa
C
,
Lanna
C
,
Costa-Pereira
A
,
Freitas
A
.
Hospitalisations with Hidradenitis Suppurativa: An Increasing Problem That Deserves Closer Attention
.
Dermatology
.
2016
;
232
(
5
):
613
8
.
[PubMed]
1018-8665
42.
Zouboulis
CC
,
Desai
N
,
Emtestam
L
,
Hunger
RE
,
Ioannides
D
,
Juhász
I
, et al.
.
European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa
.
J Eur Acad Dermatol Venereol
.
2015
Apr
;
29
(
4
):
619
44
.
[PubMed]
0926-9959
43.
Alikhan
A
,
Sayed
C
,
Alavi
A
,
Alhusayen
R
,
Brassard
A
,
Burkhart
C
, et al.
.
North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part II: Topical, intralesional, and systemic medical management
.
J Am Acad Dermatol
.
2019
Jul
;
81
(
1
):
91
101
.
[PubMed]
0190-9622
44.
Seyed Jafari
SM
,
Knüsel
E
,
Cazzaniga
S
,
Hunger
RE
.
A Retrospective Cohort Study on Patients with Hidradenitis Suppurativa
.
Dermatology
.
2018
;
234
(
1-2
):
71
8
.
[PubMed]
1018-8665
45.
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
Dec
;
71
(
6
):
1144
50
.
[PubMed]
0190-9622
46.
Fertitta
L
,
Hotz
C
,
Wolkenstein
P
,
Méningaud
JP
,
Sawan
D
,
Hersant
B
, et al.
.
Efficacy and satisfaction of surgical treatment for hidradenitis suppurativa
.
J Eur Acad Dermatol Venereol
.
2020
Apr
;
34
(
4
):
839
45
.
[PubMed]
0926-9959
47.
Prens
LM
,
Huizinga
J
,
Janse
IC
,
Horváth
B
.
Surgical outcomes and the impact of major surgery on quality of life, activity impairment and sexual health in hidradenitis suppurativa patients: a prospective single centre study
.
J Eur Acad Dermatol Venereol
.
2019
Oct
;
33
(
10
):
1941
6
.
[PubMed]
0926-9959
48.
HUMIRA
. (adalimumab), antiTNFα [Internet]. Haute Autorité de Santé. [cited 2020 Apr 26]. Available from: https://www.has-sante.fr/jcms/c_2619541/fr/humira-adalimumab-antitnf
49.
Kerdel
FR
,
Azevedo
FA
,
Kerdel Don
C
,
Don
FA
,
Fabbrocini
G
,
Kerdel
FA
.
Apremilast for the Treatment of Mild-to-Moderate Hidradenitis Suppurativa in a Prospective, Open-Label, Phase 2 Study
.
J Drugs Dermatol
.
2019
Feb
;
18
(
2
):
170
6
.
[PubMed]
1545-9616
50.
Vossen
AR
,
van Doorn
MB
,
van der Zee
HH
,
Prens
EP
.
Apremilast for moderate hidradenitis suppurativa: results of a randomized controlled trial
.
J Am Acad Dermatol
.
2019
Jan
;
80
(
1
):
80
8
.
[PubMed]
0190-9622
51.
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 Invest Dermatol
.
2013
Jun
;
133
(
6
):
1506
11
.
[PubMed]
0022-202X
52.
Deckers
IE
,
Mihajlović
D
,
Prens
EP
,
Boer
J
.
Hidradenitis suppurativa: a pilot study to determine the capability of patients to self-assess their Hurley stage
.
Br J Dermatol
.
2015
;
172
(
5
):
1418
9
.
[PubMed]
0007-0963
53.
Rondags
A
,
Volkering
RJ
,
Turcan
I
,
Zuidema
YS
,
Janse
IC
,
Horvath
B
.
The Refined Hurley Patient Questionnaire: An Accurate Self-assessment Instrument for Deriving the Correct Refined Hurley Stage in Hidradenitis Suppurativa
.
Acta Derm Venereol
.
2019
Jun
;
99
(
7
):
703
4
.
[PubMed]
0001-5555
54.
Jalenques
I
,
Ciortianu
L
,
Pereira
B
,
D’Incan
M
,
Lauron
S
,
Rondepierre
F
.
The prevalence and odds of anxiety and depression in children and adults with hidradenitis suppurativa: systematic review and meta-analysis
.
J Am Acad Dermatol
.
2020
Aug
;
83
(
2
):
542
53
.
[PubMed]
0190-9622
55.
Richette
P
,
Molto
A
,
Viguier
M
,
Dawidowicz
K
,
Hayem
G
,
Nassif
A
, et al.
.
Hidradenitis suppurativa associated with spondyloarthritis— results from a multicenter national prospective study
.
J Rheumatol
.
2014
Mar
;
41
(
3
):
490
4
.
[PubMed]
0315-162X
56.
Kimball
AB
,
Jemec
GB
,
Yang
M
,
Kageleiry
A
,
Signorovitch
JE
,
Okun
MM
, et al.
.
Assessing the validity, responsiveness and meaningfulness of the Hidradenitis Suppurativa Clinical Response (HiSCR) as the clinical endpoint for hidradenitis suppurativa treatment
.
Br J Dermatol
.
2014
Dec
;
171
(
6
):
1434
42
.
[PubMed]
0007-0963
57.
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
Oct
;
161
(
4
):
831
9
.
[PubMed]
0007-0963
58.
Hessam
S
,
Salem
J
,
Bechara
FG
,
Haferkamp
A
,
Heidenreich
A
,
Paffenholz
P
, et al.
.
Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information
.
Int J Dermatol
.
2017
Jul
;
56
(
7
):
726
32
.
[PubMed]
0011-9059
You do not currently have access to this content.