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Clinical and Laboratory Investigations

Dermatology 2007;215:123–129 Received: November 2, 2006


Accepted: February 27, 2007
DOI: 10.1159/000104263

Atopic Dermatitis: Impact on the Quality


of Life of Patients and Their Partners
L. Misery a A.Y. Finlay d N. Martin b S. Boussetta b C. Nguyen c E. Myon b
C. Taieb b
a
Department of Dermatology, University Hospital, Brest, b Department of Public Health, Pierre Fabre Laboratories,
Boulogne, and c Laboratoires Pierre Fabre Santé, Castres, France; d Department of Dermatology, Wales College of
Medicine, Cardiff University, Cardiff, UK

Key Words Introduction


Atopic dermatitis patients, partners  Quality of life  Sexual
partner Atopic dermatitis is defined as an inflammatory skin
manifestation associated with atopy [1]. Although the di-
agnostic criteria are currently the subject of debate [2],
Abstract the UK Working Party diagnostic criteria (which have
Background: The impact of atopic dermatitis (AD) on the been applied by the authors) have been validated in dif-
patient’s quality of life is relatively well known. However, the ferent settings and geographical regions. The prevalence
influence on the patient’s spouse has never been studied. of atopic dermatitis is obviously increasing [3].
Objective: To evaluate the impact of AD on the quality of life, Atopic dermatitis decreases in terms of incidence and
sleeping and sexual life of patients and their partners. Meth- severity with the advancing age of the patient [4]. How-
ods: In this cross-sectional study, patients and their partners ever, 40% of adolescents [5] may still suffer from their
completed a number of questionnaires asking about their childhood atopic dermatitis and 50% of adults who had
general health and their quality of life [Short Form 12, Ep- atopic dermatitis may continue to experience recurrences
worth, Dermatology Life Quality Index (DLQI)] and complet- [6], even though the symptoms may remain very moder-
ed an idiosyncratic measure asking about their sexual func- ate [6].
tioning. AD severity was clinician rated using Scoring atopic Although atopic dermatitis is not life-threatening, it is
dermatitis (SCORAD). Results: A total of 266 patients were an uncomfortable and highly visible disorder. Daily care
included. The mean DLQI score was 8.8. The physical and and factors which trigger acute episodes, which overall
mental composite 12 scores were 50.7 and 39.5, respectively. are unpredictable, require constant vigilance. Pruritus is
These 3 scores were significantly related to SCORAD. A de- a cause of discomfort, as is pain in other disorders, and
crease in sexual desire due to AD was noted in 57.5% of pa- results in sleep disorders. Atopic dermatitis is often as-
tients. The quality of life of partners did not appear to be sociated with atopic manifestations: asthma, spasmodic
particularly impaired, but 36.5% reported that the appear- rhinitis and conjunctivitis, which can also impair the
ance of eczema had an impact on their sex life. Conclusion: health quality of life of the patients (children and/or
The influence of AD on sex life is significant both for the pa- adults) [1, 3, 7].
tients and their partners. Copyright © 2007 S. Karger AG, Basel Given that the impact of atopic dermatitis on the qual-
ity of life of infants or young children and of their fam-
ilies has been reported in many previously published ar-
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© 2007 S. Karger AG, Basel Prof. Laurent Misery


1018–8665/07/2152–0123$23.50/0 Service de Dermatologie, CHU Morvan
University of Exeter

Fax +41 61 306 12 34 FR–29609 Brest Cedex (France)


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E-Mail karger@karger.ch Accessible online at: Tel. +33 298 22 33 15, Fax +33 298 22 33 82
www.karger.com www.karger.com/drm E-Mail laurent.misery@chu-brest.fr
ticles, the adverse consequences of this disorder on chil- considered: severity of clinical signs, extension of the dermatosis
dren’s quality of life no longer need to be demonstrated. and severity of symptoms (pruritus and sleep disorders) accord-
ing to visual analog scales. Currently, it is the most widely used
Conversely, the influence on the quality of life of family score for assessment of the disease severity.
members [8] is relatively unknown. The SF-12 scale [14, 15], the short version of the SF-36, is a ge-
The management of a chronic illness should also take neric instrument used as a population health measure. The high-
into account the role of the disorder in the patients’ im- er the score, the better the quality of life. The replies to the ques-
mediate family. Thus, proximology studies the daily im- tions are dichotomic (yes/no), ordinal (excellent to poor) or ex-
press a frequency rate (constantly to never). Two scores can be
pact on the parents of a sick child or on the partner of an calculated based on 12 questions: a physical composite score
adult patient. The impact of atopic dermatitis on the qual- (PCS-12) and a mental composite score (MCS-12). There is no
ity of life of an adult patient is (partially) known, but, to global score. In case of a non-reply to a question comprising one
our knowledge, its effect on the partner has never been of the subscales, the score cannot be calculated. The PCS-12 and
evaluated. MCS-12 scores are obtained by addition, using regression coeffi-
cients for each question. Lastly, they are converted [mean score of
Some studies were previously performed on the sexu- 50 and standard deviation (SD) of 10] to be compared to US ‘stan-
al impact of skin diseases, but there are very few about dards’, i.e. a representative sample of the US population (transla-
atopic dermatitis [9–11]. tion note for more clarity). This conversion allows the scores to be
The present study is a cross-sectional analysis whose directly compared to those of the general US population. There-
objective was to evaluate the impact of atopic dermatitis fore, the scores above and below 50 are above and below the mean
scores of the general US population, i.e. a representative sample
on the quality of life, and also more precisely qualities of of the US population. We used the French version of SF-12, which
sleeping and sexual life, of adult patients with this condi- has been previously evaluated [16].
tion and on that of their partners (where applicable). The Epworth scale [13] is a self-questionnaire comprised of 8
items which evaluate daytime sleepiness. Thus, it is an indirect
measurement of sleep disorders. Each of the items takes into ac-
count relatively common situations, in which subjects are asked
Patients and Methods to state their opinion on the likelihood of falling asleep. A total
score is calculated. The higher the score, the higher the likelihood
This study was entitled ESCAPADE (in French: Evaluation si- for a subject to fall asleep. The maximum score is 24 and the mean
multanée conjoint et adultes patients atteints de dermatite score of subjects with no sleep disorders is about 5 [17].
atopique; in English: simultaneous evaluation on adult patients The DLQI is a health quality of life scale specific to dermato-
suffering atopic dermatitis and their partners). logic disorders [18]. It is comprised of 10 items which focus on 6
The study was observational and did not modify the relation dimensions: ‘symptoms’, ‘daily activities’, ‘leisure’, ‘work’, ‘per-
between the dermatologist and his patient. Therefore, it was not sonal relationships’ and ‘treatment’. A total score (between 0 and
concerned by a specific law in France and thus did not require a 30) is calculated and can be expressed as a percentage. The high-
submission to an ethics committee. Moreover, anonymity of the er the score, the more quality of life is impaired. The health qual-
patients and partner did not allow to identify them. ity of life is considered impaired with a score of 6, very impaired
Between May and September 2004, 90 French dermatologists with a score of 11 and extremely impaired with a score of 21 or
included patients over 16 years of age with atopic dermatitis (ac- greater [19].
cording to the UK Working Party criteria) [12]. The dermatolo- The questionnaire about sexuality was not yet validated but
gists registered the clinical profile of the patient’s atopic dermati- was used in the study CHOQ (Cohorte HBP Observatoire et
tis and calculated the SCORAD (Scoring atopic dermatitis) in- Qualité de Vie) [20]. In this study, the objective was to evaluate
dex. the impact of benign prostate hypertrophy on patient’s quality of
Patients and their partners (if applicable) completed a range of life and on their partners’. This study demonstrated, thanks to
questionnaires: two health quality of life rating scales [Short this sexual questionnaire, that the more important the severity of
Form 12 (SF-12) and Epworth] and a questionnaire on the impact benign prostate hypertrophy is, the more the quality of life is fad-
on sex life. Concerning the patient, the Dermatology Life Quality ed. This questionnaire included 7 items for the patients and 6 for
Index (DLQI) supplemented the effect of atopic dermatitis on the their partners. The replies to each item were ordinal (never to al-
health quality of life. Lastly, the patients and their partners were ways). The analysis of this questionnaire was realized by item and
asked to reply to the following question: ‘Currently, do you con- no global score was calculated.
sider your eczema (atopic dermatitis) as: mild, moderate, severe
or very severe?’ For all of the questions, the patients and partners Statistical Analysis
had to reply separately and anonymously. Quantitative variables were compared between groups using
the Student t test (if there were 2 groups) or using ANOVA (if there
Measures were more than 2 groups). Qualitative variables were compared
The SCORAD [13] is an index intended to evaluate the sever- using the 2 test or Fisher’s exact test if the conditions for applica-
ity of atopic dermatitis. The SCORAD makes it possible to stan- tion were not fulfilled. Statistical analyses were preformed using
dardize the measure of severity by an overall approach which the SAS software version 8.2 (SAS Institute). Simple regressions
takes into account signs and symptoms. Three parameters are were made to explore associations between certain variables.
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Results Table 1. Quality of life in patients (DLQI)

Characteristics of the Patient Population DLQI patient Subjects Mean 8 SD


The population consisted of 266 patients, 34.2% males DLQI by population 247 8.785.32
and 65.8% females. The mean age was 32.7 years (SD = DLQI mean by gender
12.7) and the duration of atopic dermatitis was 19.3 years Male 84 8.785.3
on average (SD = 13.4). The mean SCORAD score was Female 155 8.885.4
44.6 (SD = 17.1): 1.6% of our population presented with p = 0.8171
DLQI mean by severity of AD
mild atopic dermatitis (SCORAD scores between 0 and evaluated by dermatologist
14), 42.9% with moderate atopic dermatitis (SCORAD Moderate 104 6.884.4
scores between 15 and 40) and 55.6% with severe atopic Severe 135 10.285.6
dermatitis (SCORAD scores strictly greater than 40). As p < 0.0011
the number of patients with mild severity was too small
AD = Atopic dermatitis.
(less than 10 patients), we decided to not include them in 1 The statistical test used was the t test.
the group analysis because we needed at least 30 patients
per group to perform this kind of analysis. Of the pa-
tients, 35.3% lived alone, 27.6% lived with a partner and
had no children, 36.4% lived with a partner with a child,
and 0.8% lived in a community. The occupation catego- Table 2. Quality of life in patients (SF-12)
ries which were most commonly represented were sala-
ried workers (16%), students (13%) and teachers (10%). Score Subjects Mean 8 SD

PCS-12 patient
Patient Results
The mean DLQI score was 8.8 (SD = 5.5), with no sig- PCS-12 mean by population 222 50.787.2
nificant gender differences [8.6 for males (SD = 5.3) vs. PCS-12 mean by gender
8.8 for females (SD = 5.6)] (table 1). An analysis according Male 80 51.787.3
Female 142 50.687.2
to severity (assessed using the SCORAD scores) demon- p = 0.7141
strated DLQI scores of 6.8 (SD = 4.4) and 10.2 (SD = 5.6), PCS-12 mean by severity of AD
respectively, for the groups with moderate and severe evaluated by dermatologist
atopic dermatitis (p ! 0.0001). Localization of the skin Moderate 93 52.685.9
lesions had a significant impact: the mean DLQI was 10 Severe 117 49.287.9
p = 0.00061
(SD = 5.4) for the group of patients presenting with dis-
ease involvement of the hands or face versus 8.1 (SD = 5.2) MCS-12 patient
for the group of patients with no visible lesions (p =
MCS-12 mean by population 222 39.6810.5
0.0074). The duration of the atopic dermatitis did not MCS-12 mean by gender
have a significant influence on the DLQI score. Male 80 40.989.9
Although the physical dimensions (PCS-12) of the SF- Female 142 38.9810.7
12 did not seem to be impaired [score = 50.7 (SD = 7.3)], p = 0.1591
conversely the mental dimension (MCS-12) was consid- MCS-12 mean by severity of AD
evaluated by dermatologist
erably impaired [score = 39.5 (SD = 10.6)]. In an analysis Moderate 93 43.089.7
performed by severity group (based on the SCORAD Severe 117 36.5810.2
scores), the MCS-12 scores were 42.8 (SD = 9.8) and 36.5 p < 0.0011
(SD = 10.1), respectively, for the moderate and severe
groups (p ! 0.0001). Similarly, the physical dimensions AD = Atopic dermatitis.
1 The statistical test used was the t test.
(PCS-12) were significantly (p ! 0.001) impaired depend-
ing on severity: 52.6 (SD = 5.9) and 49.2 (SD = 7.9), re-
spectively, for the moderate and severe groups (table 2).
Daytime sleepiness (Epworth scale) showed a mean
score of 6.7 (SD = 4.7). Analysis by severity of atopic der-
matitis (SCORAD) did not demonstrate any significant
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Table 3. Epworth scores of patients and partners Partner Results
Of the 266 patients questioned, 167 lived with a part-
Epworth score Subjects Mean 8 SD ner, and 156 of the partners responded to the question-
Patient naire, i.e. an effective response rate of 93.4%. The mean
age of the partners was 37.7 years (SD = 12.2), with 67.1%
Epworth mean score 232 6.784.7 males and 32.9% females.
Epworth mean score by gender Approximately 1 partner out of 6 (14.7%) stated that
Male 81 6.584.5 the atopic dermatitis could ‘sometimes’ be contagious. In
Female 146 6.884.8
p = 0.6591 addition, 60.4% of spouses feared the transmission of
Epworth mean score by severity atopic dermatitis to their child. When asked about the
of AD evaluated by dermatologist impact of their partner’s atopic dermatitis on their sex
Moderate 95 6.284.8 life, 32% stated that atopic dermatitis at least ‘sometimes’
Severe 124 7.284.6 resulted in a decrease in their sexual desire. This impact
p = 0.1481
on sexual desire was related to atopic dermatitis severity:
Partner 16.3% in the moderate atopic dermatitis group versus
Epworth mean score 134 6.184.8 39.5% in the severe atopic dermatitis group (p = 0.005;
Epworth mean score by gender table 5). Concerning the question ‘Does your spouse’s ec-
Male 90 6.184.6 zema produce a decrease in your spouse’s sexual desire?’,
Female 43 6.385.3
48.3% of spouses replied at least ‘sometimes’. Neverthe-
p = 0.8621
Epworth mean score by severity less, 63.5% of spouses stated that the appearance of their
of AD evaluated by dermatologist partner’s eczema had ‘never’ had an impact on their sex
Moderate 49 6.485.7 life (table 4).
Severe 80 6.184.2 The partners’ quality of life, as measured by SF-12, did
p = 0.7431
not appear related to the severity of the patients’ atopic
AD = Atopic dermatitis. dermatitis, as rated by SCORAD. This was verified both
1 The statistical test used was the t test. for the physical and mental dimensions. The partners’
SF-12 scores were 54 (SD = 6.1) and 49.3 (SD = 8.2), re-
spectively, for the physical and mental dimensions (ta-
ble 6). However, the mental dimension was more severely
impaired when the partner was a female (MCS-12 = 46.8
difference: the mean Epworth score was 6.2 (SD = 4.8) for and SD = 10 vs. MCS-12 = 50.6 and SD = 6.8 for males,
the moderate atopic dermatitis versus 7.1 (SD = 4.6) for p ! 0.002).
the severe atopic dermatitis group (table 3). The sleep quality of the partner was also measured,
When the patients were asked about the impact of with the Epworth scale. Overall, it was not impaired. Nei-
atopic dermatitis on their sex life, only 10.5% stated that ther did the scores obtained demonstrate any relationship
their atopic dermatitis had no effects on their physical with the patient’s atopic dermatitis (table 3).
appearance, and 18.3% expressed that their spouses
feared the illness may be contagious. The direct effects of Comparison between Patient and Partner Responses
atopic dermatitis on the patients’ sex life were significant: While 81.4% of patients and 84.7% of partners knew
a decrease, at least occasionally, in sexual desire for 57.5% that atopic dermatitis was not contagious, 18.6 and 15.3%,
of patients, effects on sex life due to the appearance of respectively, thought that it could ‘sometimes’ be conta-
atopic dermatitis (redness, dry skin) for 55.4% of patients gious. Furthermore, 70% of patients and 60.4% of part-
and impact of treatment on sex life for 46.8% (table 4). ners feared transmission of atopic dermatitis to their
Moreover, we evaluated differences between patients child (66.7% of females vs. 57.3% of males).
with or without partners in their answers to the sexual Of the partners, 63.5% responded that eczema (and its
questionnaire. There were no differences, except for the treatment 68.2%) had never had an impact on their sex
question ‘Is your partner afraid that your disease is con- life, while this was not the case in 44.6% of patients (and
tagious?’ Indeed more patients who were celibates thought 53.2% for its treatment) (table 7).
that their partners would be afraid that the disease could
be contagious (27.4 vs. 11.9%).
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Table 4. Impact of atopic dermatitis on sex life according to the patients and the partners

Patients Spouses
never some- often always total never some- often always total
times times

Is your spouse afraid that your illness is contagious? 192 39 2 2 235 127 22 0 1 150
Do you believe that your spouse’s disease is contagious? (81.70) (16.60) (0.85) (0.85) (100) (84.67) (14.67) (0) (0.67) (100)
Are you afraid of transmitting your eczema to your child? 24 14 18 24 80 57 54 23 10 144
Are you afraid of transmitting your spouse’s eczema to your (30.00) (17.50) (22.50) (30.00) (100) (39.58) (37.50) (15.97) (6.94) (100)
child?
Does your eczema decrease your sexual desire? 105 99 36 7 247 100 40 6 1 147
Does your spouse’s eczema decrease your sexual desire? (42.51) (40.08) (14.57) (2.83) (100) (68.03) (27.21) (4.08) (0.68) (100)
Does your eczema decrease your spouse’s sexual desire? 144 69 13 1 227 76 53 16 2 147
Does your spouse’s eczema decrease your sexual desire? (63.44) (30.40) (5.73) (0.44) (100) (51.70) (36.05) (10.88) (1.36) (100)
Does the appearance of your eczema (redness, dryness) have an 111 97 33 8 249 94 45 8 1 148
impact on your sex life? (44.58) (38.96) (13.25) (3.21) (100) (63.51) (30.41) (5.41) (0.68) (100)
Does the appearance of your spouse’s eczema (redness, dryness)
have an impact on your sex life?
Does the treatment of your eczema have an impact on your 132 82 25 9 248 101 36 8 3 148
sexuality? (53.23) (33.06) (10.08) (3.63) (100) (68.24) (24.32) (5.41) (2.03) (100)
Does the treatment of your spouse’s eczema have an impact on
your sexuality?

Figures in parentheses are percentages.

Table 5. Correlation between severity


and impact of atopic dermatitis on the Impact on Total Moderate Severe p value
spouses’s sexual desire sexual desire at (2)
least sometimes n % n % n %

No 93 68.89 41 83.67 52 60.47 0


Yes 42 31.11 8 16.33 34 39.53 0.005
Total 135 100.00 49 100.00 86 100.00 0.005

Discussion quality of life. In our study, the quality of life was primar-
ily impaired in its psychological dimension.
The study results demonstrate an impairment of the It is shown here that an impairment of the mental di-
quality of life of adult patients suffering from atopic der- mension and a specific impairment of the quality of life is
matitis. This impairment was much more significant in more pronounced in patients with lesions on visible areas
severe atopic dermatitis, in particular according to the of the body, which confirms the need for specific manage-
DLQI, especially when the patient index was greater than ment of atopic dermatitis as a function of lesion localiza-
8. For patients without dermatological disorder, it was tion. A German study [22] investigated the impact, in par-
only 0.5 [15]. This confirms the results of other studies. ticular the occupational one, of the presence of lesions on
A British one [21] investigated the influence of psycho- the hands. Questionnaires such as the SF-36 or DLQI list
logical and clinical factors on the quality of life of adult very few items on the visible lesions. Therefore, it seemed
patients with atopic dermatitis. These results demon- relevant for Coenraads et al. [22] to propose a question-
strated a correlation between psychological harm and naire which examined the impact of lesions on the pa-
impairment of quality of life. The British study also re- tient’s occupational life (i.e. relationships with colleagues),
vealed a relationship between severity of the illness and since it is important to take this parameter into account.
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Table 6. Quality of life of the partners Very little is known about the impact of atopic derma-
titis on patients’ sex life. A study in the Netherlands [11]
Score Subjects Mean 8 SD investigated the effect of chronic skin diseases on sex life.
PCS-12 partner This cross-sectional study enrolled 52 patients with pso-
PCS-12 mean score by population 142 5486.1 riasis and 25 with atopic dermatitis. A third of the pa-
PCS-12 mean score according to AD tients, especially those with psoriasis, reported that they
severity evaluated by a dermatologist had problems in having sexual relations or were embar-
Moderate 47 54.786.5 rassed during such relationships. These figures support
Severe 85 53.586
p = 0.28 those of our study, i.e. that atopic dermatitis substantial-
MCS-12 partner ly affects sexual desire.
MCS-12 mean score by population What makes our study different is that for the first
MCS-12 mean score according to AD 142 49.388.2 time a quality of life investigation examined the part-
severity evaluated by a dermatologist ner’s viewpoint and we compared these results to those
Moderate 47 49.489.6
Severe 85 4987.5 obtained from the patient. The impact of atopic dermati-
p = 0.84 tis on sex life is significant for both the patient and the
partner. The role of atopic dermatitis in sex life can war-
AD = Atopic dermatitis. rant sexual counseling in some patients, even though the
best approach is probably treatment of the atopic derma-
titis itself [23]. Atopic dermatitis has an impact on the
opportunity for employment of adults and hinders career
options [24]. Negative effects are also observed in family
Table 7. Concordance between statements concerning impact on relations. They are much more significant in families
sex life
which have a low income [24]. Therefore, the social im-
Statement p value RSpearman pact does not only involve the patient’s public life but also
his/her private life.
Is your spouse afraid that your illness <0.001 0.63 Although atopic dermatitis is not life-threatening, it
is contagious?/Do you believe that your can on the other hand threaten the quality of life of the
spouse’s disease is contagious?
patient and that of the partner. The demonstrated severe-
Are you afraid of transmitting your <0.001 0.53 ly impaired mental dimension of the disorder and the sig-
eczema to your child?/Are you afraid of nificant impact on important physiological functions,
transmitting your spouse’s eczema to your
child?
such as sleep and sex life, confirm the need for global
management of atopic dermatitis. Our rating scale on
Does your eczema decrease your sexual <0.001 0.55 daytime sleepiness did not demonstrate any abnormality
desire?/Does your spouse’s eczema decrease
your sexual desire? in patients or their partners. This is in contradiction with
the results of other studies that demonstrated sleep disor-
Does your eczema decrease your spouse’s <0.001 0.62 ders (the other studies used a visual analog scale). It can
sexual desire?/Does your spouse’s eczema
decrease your spouse’s sexual desire? be concluded that these potential sleep disorders had little
impact on daytime vigilance.
Does the appearance of your eczema <0.001 0.56
This disorder is not always very well understood in
(redness, dryness) have an impact on your
sex life?/Does the appearance of your couple relationships, with patient’s partners often seem-
spouse’s eczema (redness, dryness) have ing to be less affected by the eczema in their sex life than
an impact on your sex life? the patients are. It appears necessary to promote discus-
Does the treatment of your eczema have <0.001 0.52 sion of the disorder among couples. Generally, the knowl-
an impact on your sexuality?/Does the edge regarding the contagiousness of this disorder is
treatment of your spouse’s eczema have an good, but it is poor among about 15% of couples. Such
impact on your sexuality? data again raise the question of the usefulness of adult
patient education in terms of their disease and its treat-
ment.
This study underlines that atopic dermatitis concerns
the whole family, due to its repercussions on the atten-
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dants and especially on the partners. In clinical practice, others are alone, and to better understand the ideas of
the practitioners have to keep this notion in mind. Be- patients and partners about their perceptions of atopic
yond, there is a need for further studies to better assess dermatitis. The use of quality of life scales which are not
the sexual functioning of patients and their partners, to related to health may be more helpful for partners.
better explain why some patients have partners, whereas

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