DOI: 10.1111/jdv.

15519 JEADV

POSITION STATEMENT

Quality of life measurement in hidradenitis suppurativa:

position statement of the European Academy of
Dermatology and Venereology task forces on Quality of Life
and Patient-Oriented Outcomes and Acne, Rosacea and
Hidradenitis Suppurativa
P.V. Chernyshov,1,* C.C. Zouboulis,2 L. Tomas-Aragones,3 G.B. Jemec,4,5 A. Svensson,6
L. Manolache,7 T. Tzellos,8,9 F. Sampogna,10 N. Pustisek,11 H.H. van der Zee,12 S.E. Marron,13
S. Spillekom-van Koulil,14 A. Bewley,15,16 D. Linder,17 D. Abeni,10 J.C. Szepietowski,18 M. Augustin,19
A.Y. Finlay20
1
Department of Dermatology and Venereology, National Medical University, Kiev, Ukraine
2
Departments of Dermatology, Venereology, Allergology and Immunology, Dessau Medical Center, Brandenburg Medical School
Theodor Fontane, Dessau, Germany
3
Department of Psychology, University of Zaragoza, Zaragoza, Spain
4
Department of Dermatology, Zealand University Hospital, Roskilde, Denmark
5
Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark
6
Department of Dermatology and Venereology, Skane University Hospital, Malmo €, Sweden
7
Dermatology, Dali Medical, Bucharest, Romania
8
Department of Dermatology, Faculty of Health Sciences, University Hospital of North Norway, Troms, Norway
9
Department of Clinical Medicine, UiT The Arctic University of Norway, Tromsø, Norway
10
Clinical Epidemiology Unit, IDI-IRCCS, Rome, Italy
11
Children’s Hospital Zagreb, Medical School, University of Zagreb, Zagreb, Croatia
12
Department of Dermatology, Erasmus University Medical Center, Rotterdam, The Netherlands
13
Department of Dermatology, Royo Villanova Hospital, Aragon Psychodermatology Research Group (GAI+PD), Zaragoza, Spain
14
Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The
Netherlands
15
Whipps Cross University Hospital, London, UK
16
The Royal London Hospital, London, UK
17
Unit of Dermatology, Ben Gurion University of the Negev, Beer-Sheva, Israel
18
Department of Dermatology, Wroclaw Medical University, Wroclaw, Poland
19
Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf,
Hamburg, Germany
20
Department of Dermatology and Wound Healing, Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK
*Correspondence: P.V. Chernyshov. E-mail: [email protected]

Abstract
This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on
Quality of Life (QoL) and Patient-Oriented Outcomes and the EADV TF on acne, rosacea and hidradenitis suppurativa
(ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on
HS-specific health-related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommen-
dations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most
other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Der-
matology Life Quality Index (DLQI). There is a lack of high-quality clinical trials in HS patients where HRQoL instruments
have been used as outcome measures. One double-blind randomized placebo-controlled trial on infliximab with low
number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo
group. Well-designed clinical studies in HS patients to compare different treatment methods, including surgical methods
and assessing long-term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present
able to recommend existing HS-specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the
dermatology-specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, vali-
dation and use of other HS-specific, dermatology-specific and generic instruments but such use should be based on the

JEADV 2019, 33, 1633–1643 © 2019 European Academy of Dermatology and Venereology
 14683083, 2019, 9, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jdv.15519 by Nat Prov Indonesia, Wiley Online Library on [14/08/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
1634 Chernyshov et al.

principles presented in the previous publications of the EADV TF on QoL and Patient-Oriented Outcomes.
Received: 27 November 2018; Accepted: 4 February 2019

Conflict of interest
AYF is joint copyright owner of the DLQI, CDLQI, IDQoL, DFI and FDLQI and other quality of life measures:
Cardiff University and AYF receive royalties from the use of these measures. AYF has received honoraria for
advisory boards: Sanofi, Novartis, Napp, Galderma. GBJ has received consulting fees from Abbvie, MSD,
LEO pharma, Novartis, InflaRx, Pierre-Fabre and UCB; lecture fees from Abbvie and Galderma; grant support
from Abbvie, Novartis and LEO Pharma. GBJ has served as investigator for AbbVie, Actelion, Janssen, Leo
Pharma, Novartis, Regeneron and Sanofi. GBJ is a joint copyright owner of the AKQOL and SCQOL. JCS
served as a consultant and advisor for AbbVie, Almirall, Dignity Sciences, Leo Pharma, Novartis, Menlo,
Pierre-Fabre, Sandoz, Sienna Pharmaceuticals and Trevi, investigator for AbbVie, Amgen, GSK, Janssen,
Merck, Novartis, Regeneron, Trevi. Speaker for AbbVie, Galenica, Janssen, Leo Pharma, Novartis, Sun-Farm,
Sandoz, Eli Lilly. MS received lecture fees from BMS, Janssen, Acthelion and AbbVie. HZ has received
consulting and lecture fees from Abbvie and InflaRx, Galderma and LEO Pharma. FS served as a consultant
for AbbVie, Janssen and Pierre-Fabre.

Funding source
None.

Introduction Collaboration (HISTORIC).10 Clinical signs and the secondary

Hidradenitis suppurativa/acne inversa (HS) has been, since its effects on daily and social life of HS patients often cause signifi-
first description in 1839 by Velpeau,1 a medical stepchild due to cant impairment of health-related quality of life (HRQoL). Previ-
late diagnosis, lack of effective therapeutic regimens and no clear ous reviews on HS underlined the high impact of disease on
attachment to a specific medical specialty. Until recently, there patients’ lives and the absence of HS-specific HRQoL instru-
has been very little scientific interest in the disease. However, the ments.11–16 This present paper is organized jointly by the Euro-
establishment by dermatologists and patients of the Hidradenitis pean Academy of Dermatology and Venereology (EADV) Task
Suppurativa Foundation, Inc. in 2005 and of the European Force (TF) on QoL and Patient-Oriented Outcomes and the
Hidradenitis Suppurativa Foundation e.V. in 2012, the first widely EADV TF on acne, rosacea and HS (ARHS). The purpose of this
accepted definition of the disease being agreed at the 1st Interna- paper was to present current knowledge about QoL assessment in
tional Conference on HS Research on 2006 in Dessau, Germany,2 HS, including data on HS-specific HRQoL instruments and
the establishment of simple diagnostic criteria,3 guidelines for HRQoL changes in clinical trials, and to make practical recom-
treatment,4 classification and follow-up criteria5–7 and the result- mendations concerning the assessment of QoL in people with HS.
ing interest of the pharmaceutical industry8 has catapulted HS
among the diseases with the most growing scientific interest. Methods
From 1981 to 2005, there were about 15 publications on HS iden- Members of the EADV TFs on QoL/PO and ARHS were invited
tified on PubMed per year. In contrast from January 2017 to June to participate. A literature search was performed using the
2018, there were 453 publications (302 per year). PubMed database, which was searched from 1980 to September
Despite the recent focus on HS education and research, there 2018 using the key word combinations: ‘hidradenitis suppura-
is still a delay of seven years on average before the diagnosis tiva, quality of life’ and ‘acne inversa, quality of life’. All publica-
is correctly made,9 increasing the likelihood of widespread tions written in English or those having English abstracts were
scarring. considered. All those who volunteered were allocated a section
The long-term aims of understanding HS pathogenesis and the of the identified articles to review.
stratification of patients according to their probable response to Exclusion criteria:
treatment, as well as the identification of biomarkers as predictive • Review articles, guidelines, protocols
factors for individual treatment, require robust relevant molecu- • Studies without HRQoL assessment
lar studies. There has recently been the prospect of more effective • Measurement of HRQoL in conditions other than HS
treatment with the emergence of various biologics. A number of • Studies where HRQoL was studied in HS and other diseases
items for a core domain outcome set have been proposed by the but results on HS were not presented and/or discussed
Hidradenitis Suppurativa Core Outcomes Set International separately

JEADV 2019, 33, 1633–1643 © 2019 European Academy of Dermatology and Venereology
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Quality of life in hidradenitis suppurativa 1635

All publications were independently assessed by two

14 12.67
11.9 11.43
co-authors. The assessments were compared and discrepancies

Mean DLQI Scores

Very large effect
12 10.3 10 Moderate effect
discussed and resolved. The remaining publications were anal- 10 8.31
ysed in detail, and the QoL instruments used in HS were listed. 8
6
For publications on HS treatment with no data on mean HRQoL
4
scores, where possible the mean scores of the instruments used 2
were calculated using the data of individual patients. The per- 0

Fi da 69
G ce 70
e 67

d 81
C en 5
G nd 68
centage mean change of HRQoL scores from baseline was calcu-

ec

an
ed

a
e
la

an
re

re

nl
lated for each HS treatment method from data given in the

Sw
Po
included articles, as in a previous EADV Task Force study.17 The Countries
two-tailed paired t-test was used to compare mean scores before
and after treatment, with results considered significant if Figure 2 Mean DLQI scores in studies on HS from different
countries.
P < 0.05. The EADV TF on QoL and Patient-Oriented Out-
comes recommends using the word ‘quimp’18 (quality of life
impairment) in routine clinical work and research,19 and the
word has been used in this article. treatment,40–44 one study on combination of surgical treatment
with photodynamic therapy45 and two other studies on
Results photodynamic therapy.46,47 There were three studies on antibi-
From the 212 articles identified in the literature search, 142 were otics,48–50 single studies on metformin,51 PUVA,52 hyperbaric
excluded based on the exclusion criteria, leaving 70 publications oxygen therapy,53 alitretinoin,54 acitretin,55 ankinra,56 apremi-
for the final analysis. Of these 70, the number published each last,57 oral zinc gluconate combined with topical triclosan58 and
year is presented in Figure 1. In the first, published in 2001,20 verapamil.59 Detailed information on clinical trials that included
the HRQoL of 160 HS patients was studied using the Dermatol- ten or more HS patients is presented in Table 1. The percentage
ogy Life Quality Index (DLQI). The highest scoring DLQI item mean change of HRQoL scores following treatment is given in
(question 1) asked about pain, soreness, stinging or itching of Figure 3.
the skin. The mean total DLQI score was 8.9, meaning a moder- There were four double-blind randomized placebo-con-
ate effect on the patient’s life, according to the DLQI score band trolled trials reported in HS with HRQoL assessment as an out-
descriptors.21 Mean DLQI scores in subsequent HS studies from come measure. In a study of infliximab, the mean DLQI
different countries also reflected a moderate or very large effect improvement was significantly better in the treatment group
on patients’ lives (Fig. 2). The first study20 made the prescience than in the placebo group. The mean DLQI score changes were
suggestion that the DLQI may be a relevant outcome measure higher than the minimal clinically important difference
in future therapeutic trials in HS. The first such trial, pub- (MCID)60 in the treatment group and lower than the MCID in
lished in 2006, described the efficacy of etanercept in symptom the placebo group.23 In a study of etanercept, there was no sig-
control in six patients with HS.22 Numerous studies on HS treat- nificant difference between the mean DLQI score of the treat-
ment have been published since. ment group (10 patients) compared to the placebo group.37 In
the first study on adalimumab (15 patients), mean DLQI was
Clinical trials in HS not significantly worse than at the baseline.32 The second publi-
We identified seven clinical trials of infliximab,23–29 six of cation was a post hoc analysis of the 2 phase 3 studies, pioneer
adalimumab,30–35 three of etanercept22,36,37 and two of I and II on adalimumab.34 HS patients with good clinical
ustekinumab.38,39 There were five publications on surgical results had lower (better) DLQI scores and more of them had a
DLQI score change that was greater than the MCID. One open-
18 16
label, randomized controlled study on HS treatment with
Number of included

16 antibiotics and hyperbaric oxygen therapy (22 patients) or

14
publications

12
12 antibiotics alone (21 patients) showed significant improvement
10
8 7 in DLQI scores that was greater than the DLQI MCID in both
6 6 6
6 4
3 3
groups. However, the difference in QoL changes between the
4 2 2
2 1 1 1 two groups was probably not significant. Other studies had an
0 open-label design. In consequence, only one double-blind ran-
01
06
07
08
09
10
11
12
13
14
15
16
17
18

domized placebo-controlled study23 has shown significantly

20
20
20
20
20
20
20

20
20
20
20
20
20
20

Years
better improvement of HRQoL scores in the treatment group
Figure 1 Number of included publications on QoL in HS per year.
than in the placebo group. However, a limitation of that study
was the low number of patients.

JEADV 2019, 33, 1633–1643 © 2019 European Academy of Dermatology and Venereology
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1636 Chernyshov et al.

Table 1 Information on clinical trials with HRQoL assessment that included ten or more HS patients
Treatment methods Study design Number of HRQoL Effects on HRQoL References
patients instruments
Metformin Open-label 25 DLQI Baseline 15.0  4.96 51
12 weeks 10.08  5.96 (P < 0.001)
(24 weeks 7.84  6.87 (P < 0.01)
Infliximab (5 mg/kg) at weeks 0, 2 and 6, Open-label 10 DLQI The mean initial DLQI was 20.3. Mean DLQI after 27
and then every 4 weeks for 1 year treatment 6.30 (P < 0.001).
Adalimumab 80 mg at baseline, followed Open-label 15 DLQI Mean DLQI 15.9 at baseline. 31
by 40 mg every week for 24 weeks Mean DLQI 4.8 at week 24 (P < 0.001)
Mean DLQI 12.2 at week 48.
Significant change from week 24 and significantly better
than at the baseline.
Adalimumab 80 mg subcutaneously at Double-blind 15 on active DLQI Baseline: 16.1 (12.1–20.0) 32
baseline followed by 40 mg s.c. every other placebo- treatment and 6 Week 24: 16.6 (12.5–20.7)
week for 12 week controlled on placebo
randomized
Adalimumab 160 mg at week 0, followed by Open-label 10 DLQI The median DLQI scores were diminished from 13.0 to 33
80 mg at week 1, and 40 mg at alternate 7.0 at week 2 (P = 0.03), and from 13.0 to 12.0 at week 4
weeks for 12 weeks (P = 0.57), from 13.0 to 7.0 at week 8 (P = 0.37), from
13.0 to 12.0 at week 12 (P = 0.65).
Comparison of baseline with week 12 VAS and DLQI
scores failed to show statistically significant
improvement.
Infliximab Double-blind 15 on infliximab DLQI At week 8 the mean DLQI change in the infliximab group 23
placebo- was 10.0 (17.1 at baseline to 7.1 at week 8) compared
controlled with 1.6 in the placebo group (17.4 at baseline to 15.8 at
randomized week 8
[P = .003])
A combinationof systemic clindamycin Open-label 29 completed Skindex-29 At 10 weeks 48
(300 mg twice daily) and rifampicin the Emotions: from 71 to 49 (P < 0.001)
(600 mg daily) questionnaire Symptoms: from 58 to 34 P < 0.001
(out of 116) Functions: from 57 to 33 (P < 0.001)
Etanercept 50 mg/weeks Open-label 10 DLQI At 12 weeks improvement of DLQI scores from a median 36
of 19–15 (P = 0.02)
Infliximab (three infusions of 5 mg/kg at Open-label 10 DLQI The mean DLQI was reduced from 18.4 before treatment 25
weeks 0, 2 and 6) to 9.3 after 1 year (P = 0.007).
Adjunctive hyperbaric oxygen therapy Open-label, 22 (antibiotics + DLQI DLQI Antibiotic + HBOT 53
(HBOT) with the combination of randomized hyperbaric Week 0: 18.27
clindamycin (300 mg, twice per day) and controlled oxygen Week 4: 8.59
rifampicin (300 mg, twice per day) for therapy) 21 Week 10: 5.50
10 weeks. patients Antibiotic
(antibiotics) Week 0: 18.38
Week 4: 11.38
Week 10: 9.10
Significant changes between week 0 and weeks 4 and 10
and between week 4 and 10 for both groups
Thoraco-dorsal artery perforator (TDAP) Open-label SSG (n = 12) DLQI DLQI pre-op 40
flap and split-skin graft (SSG). Before and or TDAP flap 27.9 TDAP
12 months after surgery reconstruction 27.7 SSG
(n = 15) (P = 0.87)
DLQI post-op
4.7 TDAP
8.4 SSG
(P < 0.005)
DLQI point reduction
23.1 TDAP
19.3 SSG
(P = 0.02)
Acitretin monotherapy for 9 months Open-label 17 DLQI 9 patients completed 9 months course. 55
A statistically significant improvement was observed
after 1 month of therapy DLQI (P = 0.004). The
progression of improvement was recorded during the
next few months: after
3 months DLQI (P = 0.002); after 6 months DLQI
(P = 0.0001); after
9 months, DLQI (P = 0.002)
Surgical intervention (wide local excision) Open-label, 74 DLQI DLQI improved from 27.9 to 5.3 (P < 0.001) 42
retrospective

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Quality of life in hidradenitis suppurativa 1637

Table 1 Continued
Treatment methods Study design Number of HRQoL Effects on HRQoL References
patients instruments
Minocycline 100 mg once per day in Open-label 20 DLQI DLQI improved significantly 49
combination with 0.5 mg colchicine twice
per day for 6 months followed by a
maintenance regimen of 0.5 mg colchicine
administered orally twice per day for
3 months
Intralesional photodynamic therapy with 5- Open-label 38 DLQI Median DLQI improved significantly from 10 (7–17) to 1 47
aminolevulinic acid and 630 nm laser beam (0–2.3)
Oral zinc gluconate, 90 mg/day, combined Open-label, 66 DLQI DLQI improved from 12.5 to 8 (P = 0.04) 58
with topical triclosan, 2% twice daily retrospective
Ustekinumab 45 or 90 mg at weeks 0, 4, 16 Open-label 12 DLQI, Week 40: 39
and 28 Skindex-29 DLQI clinically meaningful improvement (score change
=>4) occurred in seven patients (41%).
Skindex-29
Clinically meaningful improvement of Skindex-29:
Total scores: in six of 17 patients (35%);
Functioning domain: in eight patients (47%); Emotions
domain: in four patients (24%); Symptoms domain in
three patients (18%)
Ertapenem Open-label 28 DLQI Improvement in 85.7% of patients 50
Etanercept, 50 mg, or placebo twice Double-blind 10 on DLQI There was no significant difference between groups in 37
weekly for 12 weeks. After 12 weeks, all placebo- etanercept DLQI (P = 0.12, 12 weeks; P = 0.47, 24 weeks).
patients received open-label etanercept, controlled
50 mg, twice weekly for 12 weeks randomized
Adalimumab 160 mg at week 0, 80 mg at Post hoc 316 on DLQI Hidradenitis Suppurativa Response Score (HiSCR) 34
week 2, and 40 mg weekly at weeks 4 to analysis adalimumab responders experienced significantly greater
12. and 317 patient improvement in skin-specific QoL as demonstrated by a
placebo have greater reduction in mean DLQI score; More HiSCR
completed responders achieved a clinically meaningful improvement
12 weeks in DLQI than did HiSCR non-responders (60.5% vs.
30.4%, P < 0.001)
Adalimumab Open-label 151 DLQI Clinically meaningful improvement (defined as a 4-point 35
improvement by Basra et al.60 in DLQI score from
baseline through week 72. The percentage of patients
who achieved a DLQI score of 0 or 1 increased from
baseline through week 48 and was generally maintained
through week 72.

Comparison of QoL in HS, other diseases and controls Correlation of QoL and disease severity in HS patients
People with self-reported HS and other skin diseases had more There was strong positive correlation between DLQI scores and
impaired HRQoL than the general population.61 The QoL HS clinical severity (r = 0.67).68 Further analysis revealed a
impact of HS was much greater than the impact of several slight but statistically significant positive correlation between
other dermatologic conditions.62 Patients with HS have a DLQI scores and the number of skin areas involved with HS
higher HRQoL burden than patients with psoriasis.63 Com- lesions. The mean DLQI score for patients with anogenital
pared with an age-standardized general population, HS patients involvement was 14.7  7.2, whereas the mean score for other
scored significantly worse on several dimensions of the generic locations was 9.5  7.6. HS was estimated as having a large or
15D questionnaire. A significant difference compared to psoria- extremely large effect on the patient’s life in nearly 60% of
sis patients was detected on the sexual activity dimension.64 patients examined.68 The severity of disease, as measured by
Patients with HS had significantly decreased EQ-5D scores in Hurley staging and the number of lesions, significantly corre-
all age groups except for 65-74-year-olds.65 The DLQI was used lated with the DLQI scores (b = 0.55, 0.29, respectively).69 QoL,
in parallel with the Major Depression Inventory question- as assessed with the DLQI, was also significantly different among
naire:66 HRQoL was significantly more impaired in HS patients patients in different Hurley stage groups.70 Pruritus and pain
than in controls, but the rate of depression was not significantly intensity significantly correlated with DLQI scores.71
higher in HS patients compared to controls. Patients with HS
presented significantly higher anxiety, depression, loneliness Studies on QoL and sexual problems in HS patients
and social isolation scores and lower self-esteem scores than The DLQI was used in studies on sexual health of HS
healthy controls.67 patients.72,73 HS patients had more sexual dysfunction and

JEADV 2019, 33, 1633–1643 © 2019 European Academy of Dermatology and Venereology
 14683083, 2019, 9, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/jdv.15519 by Nat Prov Indonesia, Wiley Online Library on [14/08/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
1638 Chernyshov et al.

(a) 100
90.0 Randomized double-
83.2 81.0 blind placebo-controlled
80 69.9 69.9 69.8 Open-label

% of DLQI Change
59.2 58.5
60 50.5 49.5 47.7 46.2
40.1
40 36.0
31.0
21.1
20

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(b) (c) (d) (e)

Randomized double- Randomized double-
blind placebo-controlled blind placebo-controlled
Open-label Open-label Open-label Open-label
83.2
80 69.9 80 69.8 40 36.0 70
% of DLQI Change

32.8 58.5
60

% of DLQI Change
% of DLQI Change
% of DLQI Change

60 49.5 60 30 50 46.2
47.7
21.1 40
40 31.0 40 20
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Figure 3 The percentage mean change of DLQI scores following treatment. a (All), b (After one year), c (After 24 weeks), d (After 12
weeks), e (After 8 weeks).

sexual distress compared to matched controls. Sexual distress presence or absence of genital lesions in both male and female
was higher in female than in male HS patients.72 Female sex and HS patients did not correlate with changes in DLQI scores or
late onset of HS were associated with poor sexual function. any sexual function measures.74
Impairment of HRQoL was associated with anogenital involve-
ment.73 In contrast, in another study there was no difference in Validation of HS clinical severity and response instruments
DLQI scores between men and women. Male patients had higher QoL instruments were used in several studies in the cross-valida-
sexual dysfunction and reduced QoL when compared to a con- tion of several novel HS clinical severity and response instru-
trol group. There was no significant difference between female ments: Hidradenitis Suppurativa Score (HSS),75 Hidradenitis
patients with HS and controls regarding sexual functioning. The Suppurativa Clinical Response (HiSCR),76 Acne Inversa Severity

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Quality of life in hidradenitis suppurativa 1639

Index (AISI)77 and International Hidradenitis Suppurativa frequently used, in 84% of included studies. The second most
Severity Score System (IHS4).7 frequently used instrument was another dermatology-specific
questionnaire, Skindex-29 (9% of studies). The DLQI is the
Validation of HS-specific QoL instruments most widely used HRQoL instrument in dermatology. It is a
The initial validation of two HS-specific HRQoL instruments simple 10-question questionnaire covering six domains: Symp-
was reported.78,79 These HS-specific instruments are described toms and feelings, Daily activities, Leisure, Work and School,
in detail below. Personal relationships and Treatment. Responses are on a
4-point Likert scale: the higher the score, the more QoL is
Other findings related to QoL assessment in HS patients impaired. Test–retest reliability, internal consistency, construct
There were no differences in quimp between HS patients with validity, responsiveness, score band descriptors and MCID have
different body mass index and between smokers and non-smo- been described for the DLQI. For general inflammatory skin
kers with HS.5 HS patients had low physical and social function- conditions, a change in DLQI score of at least 4 points is consid-
ing scores when assessed with the generic SF-36 HRQoL ered clinically important.89,90
questionnaire.80 A high Hurley stage and female gender were Three HS-specific HRQoL instruments were identified. One
variables that significantly correlated with the total DLQI score was used in the assessment of efficacy of infliximab treatment in
in a Finnish study of HS patients.81 Women in that study had two Danish patients with severe fistulizing HS.24 This un-named
consistently higher scores than men for every item of the DLQI. measure was a non-validated 10-item questionnaire focused on
There was no significant correlation between resilience and perianal problems (6 of 10 items) that was adopted from an
HRQoL in HS patients from the United States and Denmark.82 instrument used for Crohn’s disease.
Profound impact on the HRQoL of Irish HS patients was Another HS-specific questionnaire was developed based on
reported, including diminished work productivity and various interviews with 21 patients and the opinions of three experts: it
psychological comorbidities.83 The severity of odour in HS was modified after pilot testing in nine patients. Responses are
patients was associated with total Skindex-29 scores but not with on a 5-point Likert scale, and higher scores indicate a worse
DLQI scores.84 In an international study of the QoL impact of QoL.91 Based on results of preliminary validation in 55 HS
treatment (the last DLQI item), over half of HS patients reported patients, the number of items of the HS-QoL was reduced from
problems.85 The relationship of serum zinc levels with QoL and 53 to 44, resulting in a seven subscales: Physical consequences,
disease severity in HS was studied: low zinc levels were associ- HS symptoms, Sexual activity consequences, Emotional conse-
ated with DLQI  9.86 Self-reported depression, anxiety and quences, Social consequences, Work consequences and Social
impaired QoL were strongly associated in HS with illness per- support. The HS-QoL has a 6-month recall period. Internal con-
ceptions.87 QoL impairment was considered to be a predictor of sistency and convergent validity of the HS-QoL questionnaire
the self-evaluated health status of HS patients.88 were checked.78
The third HS-specific HRQoL instrument, the Hidradenitis
HRQoL instruments Suppurativa Burden of Disease (HSBOD), was developed based
Generic, dermatology-specific and HS-specific HRQoL instru- on interviews with patients (number of patients not presented)
ments have all been used in HS (Fig. 4). The DLQI was the most and eight dermatologists.79 The HSBOD is a 19-item question-
naire with five domains: Symptoms and feelings, Daily activities,
Leisure, Work/school and Personal relationships. Responses are
70 on a 10-cm visual analog scale (VAS). It is divided into two parts
Times used in HS

60 with different recall periods: the last 4 weeks (14 items) and the
50 entire time of having HS (5 items). The internal consistency and
40
convergent validity of the HSBOD questionnaire were checked
30
20 in studies that included 29 HS patients.
10
0 Discussion
le ind QI

tio 9
on

6
5D

S- S
F

SQ D
EQ oLM

L
es -2

-3

-5
-S
LE A

HS results in significant quimp that is higher than in most other

15
L

Q DV
Q EQ
n
qu ex

SF

D
D

-5
5

chronic skin diseases. Pain and HS symptoms have the highest

oL
ng Sk

influence on HRQoL. The social and sexual life of patients may

ro
Eu
Si

be severely affected. In some studies, female HS patients and

HRQoL instruments
those with genital involvement experienced higher quimp.
Several studies showed that, after initial improvement, the
Figure 4 How many times each HRQoL instrument was used in
HS.
HRQoL of HS patients may worsen again.31,33 It seems that sur-
gical treatment has the best effect on the HRQoL of HS patients

JEADV 2019, 33, 1633–1643 © 2019 European Academy of Dermatology and Venereology
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1640 Chernyshov et al.

over a long-term perspective. There is a lack of well-organized efficacy and the DLQI of 0-1, corresponding to ‘no effect on
placebo-controlled clinical trials with sufficient participant num- patient’s life’ according to the DLQI banding descriptions may
bers that assess different treatment methods. be considered as a difficult to reach but important treatment
Several reports have advocated the importance of HS-specific goal. The EADV TFs encourage the further development, valida-
HRQoL instruments.11,15 Some HRQoL measures used in HS tion and use of other HS-specific, dermatology-specific and gen-
have been based on a mixture of clinician opinion, literature eric instruments but such use should be based on the principles
review and patient input. However, the question content of presented in the previous publications of the EADV TF on QoL
HRQoL measures should ideally be based solely on the actual and Patient-Oriented Outcomes.96–101
experiences of patients, as is the case for the most widely used
instruments in dermatology. This is perhaps why those instru- Acknowledgement
ments have been so widely accepted worldwide.92 In order for We thank Prof. Barbara Horvath for her help during the litera-
QoL measurement to be carried out routinely in a busy clinic, it ture search.
is essential that the measure used be short, easy to understand, References
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