JEADV ISSN 1468-3083

ORIGINAL ARTICLE
Blackwell Publishing Ltd

Stigmatization experience, coping and sense of coherence in

vitiligo patients
G Schmid-Ott,*† H-W Künsebeck,† E Jecht,† R Shimshoni,† I Lazaroff,† S Schallmayer,† IT Calliess,¶
P Malewski,† F Lamprecht,† A Götz†‡
† Department of Psychosomatic Medicine, Hannover Medical School, Hannover, Germany
‡ Department of Dermatology, Castle of Friedensburg, Leutenberg, Germany
¶ Department of Social Psychiatry and Psychotherapy, Hannover Medical School, Hannover, Germany

Keywords
coping, questionnaire, sense of coherence,
stigmatization, stress, vitiligo
*Corresponding author, Hannover Medical
School, Psychosomatic Medicine,
Hannover, Germany,
E-mail: schmid-ott.gerhard@mh-hannover.de
Received: 19 December 2005,
accepted 24 January 2006
DOI: 10.1111/j.1468-3083.2006.01897.x
Abstract
Objective This study examines the extent of stigmatization experienced by
vitiligo patients considering the visibility of the lesions.
Methods 363 vitiligo patients were assessed using the Experience with Skin
Complaints (QES), Adjustment to Chronic Skin Disorders (ASC), and Sense of
Coherence (SOC) questionnaires. Out of the total patients group two
representative samples with 52 patients each were identified comparable for
age, gender, and the duration of the skin disease, the first with visible and the
second with invisible lesions.
Results Data indicate a significant negative correlation between the QES
dimensions, except for ‘Composure’, and between coping scales with sense of
coherence withstanding. The ‘visible lesions’ group scored higher compared to
the ‘invisible lesions’ group on the two QES scales ‘Self-Esteem’ and ‘Refusal’,
i.e., patients with visible lesions experienced a higher level of stigmatization.
Conclusion This study provides new information which supports the notion
that the stigmatization experience of vitiligo patients is psychologically relevant.

The cosmetic disfigurement of the affected patient is

Introduction
Vitiligo is an acquired depigmentation disorder affecting
0.5% of the world’s population.1 This chronic disease
results in white patches of skin mainly appearing on
visible areas of the body, including face and hands, and is
rarely accompanied by itching or other somatic symptoms.
The depigmentation is caused by functional melanocytes
disappearing from the lesional area of the epidermis.
However, the exact aetiology of vitiligo is still unknown.
Five main hypotheses are currently under research:1–3 the
multifactorial, the polygenic inheritance, the neural, the
self-destruct, and the autoimmune hypothesis. Moreover,
the role of a cytotoxic T-cell response has recently been
discussed.
Up to date no curative treatment is available. Current
interventions are aimed at repigmentation, total depig-
mentation or sun protection and camouflage. Therapy
includes treatment with topical tacrolimus or pime-
crolimus as well as long-term narrowband ultraviolet B
phototherapy.1,4,5
often followed by severe psychosocial impairment. Given
the visibility of chronic dermatoses, stigmatization
becomes a part of daily life in vitiligo patients, which can
lead to psychosocial stress and ultimately depression.6–10
Similar to psoriasis patients, vitiligo patients are left to
deal with a chronic, relapsing, visible and lifelong disorder
that impairs quality of life and ability to cope.11–14 These
skin diseases can be described as ‘life-ruining’, as opposed
to ‘life-threatening’;15 this can even be the case for acne.16
Therefore, a somatopsychic inquiry is central to research
in vitiligo patients as well.
Kent and Al’ Abadie7 found that the stigmatization
experience6 accounted for 39% of the variance in the
quality of life17 of vitiligo patients. On the other hand, self-
esteem, the number of symptoms on the distress checklist,
race, and general health accounted for only 12% of the
variance in quality of life. An important component of
stigma and stigmatization is the impossibility of conceal-
ing the affected skin parts and the consequent visibility.
In this respect, the psychosocial impact on women seems

456 JEADV 2007, 21, 456– 461 © 2007 European Academy of Dermatology and Venereology
Schmid-Ott et al.
to be more distinct, independent of age, partly due to
cosmetic appearance and societal definitions of idealized
beauty.
Sense of coherence (SOC) is a salient psychological
construct that can be used to explain the relationship
between stressors, coping, quality of life, and health; the
sense of coherence questionnaire inquires about attitudes
towards unexpected and burdening events. People with a
strongly marked sense of coherence demonstrated a higher
resistance to stressors.18,19
To summarize, a more detailed analysis of different
parameters (including gender/sense of coherence and
influence of visibility of skin lesions) affecting the stigma-
tization experience and coping in vitiligo patients seems to
be necessary. Some studies utilized smaller samples; e.g.
Parsad et al. examined a sample of 150 patients.12 How-
ever, previous results may have been biased, for instance,
by referring to members of self-help organizations as
study participants.7
The purpose of the present study was to measure the
stigmatization experience using the questionnaire on
experience with skin complaints (QES),8,9 originally based
on the ‘feelings of stigmatization questionnaire’ by Gins-
burg and Link.6 Different dimensions of coping were
assessed using the ‘adjustment to chronic skin disorders’
(ACS20) questionnaire. The effects of visibility of vitiligo
on these variables were also considered. In addition, sense
of coherence was evaluated using the ‘sense of coherence
questionnaire’.18 Two more variables were added; patients
were asked to rate the duration of the illness, and the
general extent of skin involvement on a scale from ‘5’
(very severe) to ‘0’ (no symptoms at the moment). Basic
sociodemographic data were also gathered for all patients.
The present study addressed the following questions:
How do women and men suffering from vitiligo differ in
their feelings of stigmatization (QES8,9) and coping strate-
gies (ACS20)? What is the modifying effect of the sense of
coherence (SOC18) regarding the coping and stigmatiza-
tion experience of vitiligo patients? How important is the
visibility of vitiligo with respect to feelings of discrimina-
tion? Are there significant differences between two groups
that differ only in respect of whether vitiligo skin lesions
are visible or not in daily life?
Patients and methods
Study procedure and patient selection
The present study was conducted at the Clinic for Der-
matology, Castle of Friedensburg, Leutenberg (Thüringen,
Germany). Forty-seven inpatients gave their informed
consent to participate in the study, were given the test
inventory and were then examined in their first week
JEADV 2007, 21, 456– 461 © 2007 European Academy of Dermatology and Venereology
Coping and stigmatization in vitiligo
after admission. Five hundred questionnaires were sent to
former vitiligo inpatients. Dermatologists of the department
confirmed the diagnoses. In total, 363 patients (47 current
inpatients and 316 former inpatients) returned complete
data. The minimum age for participation was 16 years
of age.
Patients were asked to provide a subjective rating of their
vitiligo through shading the areas affected in a line-drawing
silhouette of the front and back of a body presented on a
piece of paper. Feldman et al.21 used a similar method in
their study of psoriasis patients. They were able to assess
the extent of the skin disorder which resulted in agree-
ment with the ‘quasi-objective’ ‘psoriasis area and sever-
ity index’.22 It is noteworthy, however, that no specific
vitiligo studies have previously been conducted on this
matter.
Psychological test inventories
The questionnaire on experience with skin complaints
(QES)
Feelings of stigmatization in skin patients can be
distinguished using the QES, a self-report instrument
consisting of six scales and 38 items in total; the scoring
system was a Likert scale.8,9 High scores on the ‘interference
of skin symptoms and self-esteem (self-esteem)’ scale are
related to frequent perceptions of worthlessness, loneliness,
and uncleanliness and high scores on the ‘outward
appearance and situation-caused retreat (retreat)’ scale to
a lack of physical attractiveness or sexual desirability
within the context of the skin disease. Additional items
question special ways of clothing or avoidance of public
situations. High scores on the ‘rejection and devaluation
(rejection)’ scale correspond to intense anticipated or
perceived reactions of others and high scores on the
‘composure’ scale describe calmness and confidence in a
satisfactory life in spite of the skin disease. High scores on
the ‘concealment’ scale are related to frequent tendencies
to hide the diagnosis and keep the disease a secret and
high scores on the ‘experienced refusal’ scale to frequently
having feelings of stigmatization in very specific situations,
such as shopping or using public transportation. In a
previous study, the reliability of the six QES scales was
demonstrated through split half analyses (n = 384) where
Cronbach’s alpha fell between 0.89 and 0.59.8
The questionnaire adjustment to chronic skin disor-
ders (ASC)
The ASC is a 51-item, fully standardized self-rating
instrument used to evaluate coping strategies; the scoring
system was also a Likert scale. The ASC consists of six
457
Coping and stigmatization in vitiligo
scales:20 high scores on the ‘social anxiety/avoidance’
scale indicate a frequent avoidance of certain situations
due to a fear of rejection, and high scores on the ‘itch-
scratch circle’ scale a deficient self-control resulting in
frequent scratching. High values on the ‘helplessness’
scale correspond to the perception of an almost complete
loss of control over the course of the disease, and high
values on the ‘anxious-depressive mood’ to a problematic
adjustment to the skin disorder. High scores on the ‘impact
on quality of life’ scale are related to far-reaching objective
consequences that influence daily life, and high values on
the ‘deficit in active coping’ scale to repetitive failing
attempts of patients to find an active solution to problems;
for example by researching background information on
their skin disease.
The sense of coherence questionnaire (SOC)
The SOC Questionnaire18 is a 29-item self-report instru-
ment. Initially the three scales were comprehensibility,
manageability and meaningfulness. The original conception
of SOC was ‘a global orientation that expresses the extent
to which one has a pervasive, enduring though dynamic
feeling of confidence that: (a) the stimuli deriving from
one’s internal and external environments in the course of
living are structured, predictable, and explicable; (b) the
resources are available to one to meet the demands posed
by these stimuli; and (c) that these demands are challenges
worthy of investment and engagement’ (18, p. 123). How-
ever, only the whole questionnaire is valid and reliable
for measuring this specific attitude; its three dimensions
cannot be used to examine the three orientations
comprehensibility, manageability and meaningfulness
separately.19
Division into two subgroups ‘visible’ and ‘invisible
In order to evaluate the effects of visibility, and because of
the large sample size, two representative samples were
derived. Each sample group consisted of 52 patients, and
patients in each group were matched for age, gender, and
the duration of the skin disease. The patients in the
‘visible’ group showed vitiligo on at least one visible part
of the body (head, face, neck, arms or hands), and patients
in the ‘invisible’ group had vitiligo lesions on parts of the
body which are usually not seen in public (abdomen, legs,
feet, genitals).
Statistics
T-tests were conducted to answer the first main question,
which focused on the comparison of the stigmatization
experience (QES) and the coping (ASC) of men and
458
Schmid-Ott et al.
women. We examined the relationship between sense of
coherence (SOC), stigmatization feeling (QES) and coping
(ASC) by determining their correlation coefficients
(research question two). Finally, to address research
question three (gender differences), t-tests and Pearson
Chi-square tests were conducted to compare stigmatization
experience (QES) and coping (ASC) of matched vitiligo
patient groups with ‘invisible’ and ‘visible’ skin lesions.
Results
Response rate, sociodemographic and disease-
related characteristics of the sample
The sample consisted of 284 (78%) women and 79 (22%)
men. No significant difference was found between gender
for the mean age of our patients (43.5, SD 13.4 years), the
mean duration of the disorder (17.6, SD 11.6 years;
women 18.1, SD 11.5 years; men 16.1, SD 11.6 years) and
the general extent of skin involvement being described by
the patients on average as ‘fairly severe’ (women 3.1, men
2.9). There was a 100% response rate for inpatients and a
66.4% response rate for outpatients (former inpatients)
who were treated for vitiligo within the 3 years prior to
the study.
Influence of gender and age on QES and ASC
As shown in Table 1, t-tests revealed a significant
influence of gender on the QES ‘retreat’ (P = 0.03) and
‘composure’ (P < 0.001) scales, i.e. women retreated more
frequently and were more worried in the context of their
skin disease than men. The ASC revealed significantly
lower results for men on the ‘helplessness’ scale (P < 0.01),
that is to say, in this study men less frequently perceived
a failure of their attempts to gather an active solution to
problems related to their skin disease than women.
However, the significantly higher scores on the ‘itch-
scratch circle’ scale (P < 0.001, Table 1) are difficult to
interpret, as vitiligo only rarely involves itching. Age was
not a mitigating variable.
Sense of coherence and coping
When comparing vitiligo patients to a representative
sample of 1944 persons from the SOC handbook,18 the
sense of coherence score was significantly lower in the
vitiligo sample (P < 0.01). Moderate negative correlations
with essential associations23 indicate that a pessimistic
subjective attitude towards unexpected and burdening
events (SOC) was related to a lower ‘self-esteem’ and a
more frequent ‘refusal’ (QES scales) as well as to a
higher ‘social anxiety/avoidance’ and a more marked
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Schmid-Ott et al. Coping and stigmatization in vitiligo

Table 1 Influence of gender on stigmatization experience (QES) and coping (ACS, t-tests)

Men Women Men Women

(n = 79) (n = 284) (n = 79) (n = 284)
QES-scales (mean ± SD) (mean ± SD) P ACS-scales (mean ± SD) (mean ± SD) P

Rejection 2.6 ± 4.7 2.2 ± 3.8 0.20 Social anxiety/avoidance 31.3 ± 15.3 35.7 ± 14.6 0.11
Retreat 10.3 ± 7.3 12.9 ± 6.7 0.03 Itch-scratch circle 12.3 ± 5.9 10.6 ± 3.4 < 0.001
Self-esteem 5.7 ± 7 6.7 ± 6.2 0.32 Helplessness 24.5 ± 9.9 28.1 ± 9.1 < 0.01
Refusal 3.7 ± 4.2 3.6 ± 4 0.81 Anxious-depressive mood 17.4 ± 7.1 20.2 ± 7.4 0.11
Concealment 5 ± 5.2 6.0 ± 5 0.19 Impact on quality of life 9.3 ± 4.9 9 ± 3.7 0.40
Composure 14.2 ± 5.7 11.5 ± 5 < 0.001 Deficit in active coping 10 ± 3.5 9.6 ± 3.2 0.35

QES, Questionnaire on experience with skin complaints; ACS, Questionnaire adjustment to chronic skin disorders.

Table 2 Correlation of sense of coherence (SOC) with stigmatization Influence of visibility on QES, ASC and SOC
feeling (QES) and coping (ACS, n = 363, correlation coefficients)
To study the relationship between the location of vitiligo
QES-Scales r ACS-scales r and feelings of stigmatization (QES) and coping (ASC)
we compared a ‘visible’ lesion and an ‘invisible’ lesion
Rejection −0.27** Social anxiety/avoidance −0.45** (n = 52, 44 women and eight men in each) group. The age
Retreat −0.34** Itch-scratch circle −0.23**
of the patients of the two groups was comparable with an
Self-esteem −0.48** Helplessness −0.36**
average of 42.7 years, SD: 14.6 years (t-test, P = 1). Gender
Refusal −0.40** Anxious-depressive mood −0.62**
Concealment −0.30** Impact on quality of life −0.35** also made no significant difference (Pearson’s Chi-square
Composure 0.26** Deficit in active coping −0.34** test, P = 0.79). On the QES, the ‘visible’ lesions group
scored significantly higher than the ‘invisible’ group on
QES, Questionnaire on experience with skin complaints; ACS, the ‘retreat’ (P = 0.034) and ‘self-esteem’ scales (P = 0.041;
Questionnaire adjustment to chronic skin disorders. ** P < 0.01; Table 3), i.e. they more frequently retreated and had a
r = correlation coefficient.
lower self-esteem because of the skin disease. Patients in
the ‘visible’ group demonstrated poorer coping through
their significantly negative responses on the ASC scales
‘anxious-depressive mood’ (ASC scales, all: Table 2). The [‘social anxiety/avoidance’ (P = 0.02), ‘helplessness’ (P <
negative correlations between the other QES scales, except 0.01), ‘anxious-depressive mood’ (P = 0.04), ‘impact on
for ‘composure’ and the SOC scale, as well as between quality of life’ (P < 0.01)], except for the ‘deficit in active
the other ASC scales and the SOC scale (cf. Table 2) coping’ scale. Again, for reasons mentioned earlier, the
corresponded only to small, but definitive associations23 difference in the ‘itch-scratch circle’ (P = 0.04) should be
and thus are not further described. The impact of gender treated with caution. The comparison of the SOC scores
and age regarding the SOC scales was not relevant in this did not show a significant difference between the two
study (data not shown). groups (data not shown).

Table 3 Comparison of the stigmatization experience (QES) and the coping (ACS) of matched vitiligo patient groups with ‘invisible’ and ‘visible’ skin lesions
(t-tests)

Invisible Visible Invisible Visible

n = 52 n = 52 n = 52 n = 52
QES-scales (mean ± SD) (mean ± SD) P ACS-scales (mean ± SD) (mean ± SD) P

Rejection 1.2 ± 2.9 2.3 ± 2.3 0.13 Social anxiety/avoidance 29.9 ± 12.5 36.5 ± 15.1 0.02
Retreat 10.4 ± 6.3 13.1 ± 6.6 0.03 Itch-scratch circle 9.9 ± 3.3 11.6 ± 4.7 0.04
Self-esteem 4.7 ± 5.6 7±6 0.04 Helplessness 25.2 ± 7.6 29.6 ± 9.6 < 0.01
Refusal 2.7 ± 3.4 3.3 ± 3.5 0.41 Anxious-depressive mood 18.3 ± 7.2 21.3 ± 6.8 0.04
Concealment 5.4 ± 4.6 5 ± 4.6 0.63 Impact on quality of life 7.7 ± 3.3 9.6 ± 3.5 < 0.01
Composure 12.3 ± 5.2 11.4 ± 5.1 0.37 Deficit in active coping 9.4 ± 2.7 9.9 ± 3.1 0.37

QES, Questionnaire on experience with skin complaints; ACS, Questionnaire adjustment to chronic skin disorders.

JEADV 2007, 21, 456– 461 © 2007 European Academy of Dermatology and Venereology 459
Coping and stigmatization in vitiligo
Discussion
This is the first study that explores the stigmatization
experience and coping of vitiligo sufferers which, unlike
the study by Kent and Al’ Abadie,7 does not only include
members of a vitiligo self-help organization. Although the
strength of the present study is that it is not limited to
members of the Vitiligo Society, it should be noted that
implications are only generalizable to clinic attendees.
Patients with a need for clinical treatment are likely to be
in greater distress than the general population of vitiligo
patients. The high return rate of questionnaires is probably
attributable to an amenable relationship with the clinic.
The results presented provide further empirical evidence
for the concurrent validity of the QES8 and the ASC.20 The
median extent of skin involvement was scored by the
patients in a middle range. Age did not play a significant
role in the results. Contrary to our results, Gieler et al.
found that vitiligo patients were not characterized by
increased depression values, but that a linear relationship
between duration of illness and depression existed.13 All
evidence suggests that improving the quality of life of
vitiligo patients should be an initial important goal of
dermatological interventions.7
The present sample was predominantly female, which
is not representative of the overall equal gender distribu-
tion reported for vitiligo patients. Studies often include a
preponderance of women.7 Fitzpatrick et al. suggest that
this is because women give greater attention to cosmetic
defects.24 This is in agreement with the results of Thomp-
son et al.,25 who asked white female vitiligo patients in a
semistructured interview about their experiences. They
reported that social support helped them to cope with
stigmatization feelings, but they often had difficulty sus-
taining social networks. Thus, predictably in our study
women’s retreat and low composure regarding the stig-
matization experience led to more perceived helplessness
in coping with the disease. The lower score of the sense of
coherence scale among vitiligo sufferers, compared to a
healthy subgroup, unambiguously indicates a burden of
disease with respect to reported symptoms of anxiety,
depression or subjective stress. The clear negative correla-
tions, particularly between ‘self-esteem’ and ‘refusal’ in the
QES scale and ‘anxious-depressive mood’ in the ASC scale,
with the sense of coherence scale confirm these results.
Dividing parts of the sample into two subgroups, which
were matched on age, gender and duration of vitiligo,
allowed a comparison of the stigmatization experience
and coping with vitiligo, while concurrently specifically
focusing on the visibility of this skin disease. Initially, it
was assumed that visibility would be strongly associated
with the degree of stigmatization experience. Yet the find-
ings demonstrate that the locality of vitiligo does not play
460
Schmid-Ott et al.
such a critical role in the overall stigmatization experi-
ence. A strong tendency to retreat, including avoidance of
public situations and special ways of clothing, probably
explains the lack of significance in the other scales. For
example, if a person does not go to the theatre explicitly
because of the skin disease, other stigmatization aspects
like refusal and rejection are avoided in advance. Although
visibility does not affect the degree of stigmatization as
clearly, our results suggest that it may do so indirectly
through its correlation in coping with the skin disorder.
Coping problems regarding the visibility of the skin
lesions shown in this study are a clear consequence of a
retreated life-style. Lower scores on the ‘self-esteem’ scale
of the QES, as well as on the ‘anxious-depressive mood’
scale and the ‘helplessness’ scale of the ASC, imply a
strongly negative self-evaluation of affected persons.
Retreat and avoidance result in a reduced quality of life.
In dermatology patients high ‘general health question-
naire’ scores were associated with extensive lesions on
exposed parts of the body.26 In addition, Picardi et al.
found increased psychiatric morbidity in female outpa-
tients with skin lesions on visible parts of the body.27 They
also reported that alexithymia, insecure attachment, and
poor social support appear to increase susceptibility to
vitiligo, possibly through deficits in regulation of emotion
or reduced ability to cope effectively with stress.28 Gieler
et al. suggest that an early improvement in coping strate-
gies by means of psychotherapeutic/psychosomatic meas-
ures could reduce higher scores in some specific areas of
anxiety in vitiligo patients.13
However, these interventions independent of vitiligo
status may interfere with the term ‘psychosomatic’, which
is pejorative by definition, implying words such as
‘imaginary’, ‘mad’ or ‘made up’.29,30 Thus, a reluctance of
patients to report their psychological distress is often
observed, with the consequence of a greater focus on
physical symptoms than on psychic aspects like depres-
sion, stress or stigmatization.31 The results presented in
this study clearly support the notion that treatment of
vitiligo patients should address these emotional effects
and include tools for psychological intervention, which
may ultimately lead to better adaptation to the disease
and a higher quality of life.32 Treatment should be aimed
at improving the overall quality of life and at reducing the
stigmatization feeling caused by this chronic disease. The
importance of considering the stigmatization experience
and coping in vitiligo patients has to be emphasized in
both future research and patient treatment.
Acknowledgements
We wish to thank Iona H. Ginsburg, MD, for allowing us
to use the ‘feelings of stigmatization questionnaire’ as a
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Schmid-Ott et al.
basis for developing the ‘questionnaire on experience with
skin complaints’ (QES).
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