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University of Groningen

Hand eczema

Oosterhaven, Jart

DOI:

10.33612/diss.98242014

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from

it. Please check the document version below.

Document Version

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Publication date:

2019

Link to publication in University of Groningen/UMCG research database

Citation for published version (APA):

Oosterhaven, J. (2019). Hand eczema: impact, treatment and outcome measures.

https://doi.org/10.33612/diss.98242014

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Chapter 10

Cross-cultural validation of the

Quality Of Life in Hand

Eczema Questionnaire

RF Ofenloch, JAF Oosterhaven, P Susitaival, Å Svensson,

E Weisshaar, K Minamoto, M Onder, MLA Schuttelaar,

E Bulbul Baskan, TL Diepgen, C Apfelbacher

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ABSTRACT

The Quality of Life in Hand Eczema Questionnaire (QOLHEQ) is the only instrument assessing

disease-specific health-related quality of life in patients with hand eczema. It is available in

eight language versions. In this study we assessed if the items of different language versions of

the QOLHEQ yield comparable values across countries. An international multicenter study was

conducted with participating centers in Finland, Germany, Japan, the Netherlands, Sweden and

Turkey. Methods of item response theory were applied to each subscale to assess differential

item functioning for items among countries. Overall, 662 hand eczema patients were recruited

into the study. Single items were removed or split according to the item response theory

model by country to resolve differential item functioning. After this adjustment, none of the

four subscales of the QOLHEQ showed significant misfit to the item response theory model (P

< 0.01), and a Person Separation Index of greater than 0.7 showed good internal consistency

for each subscale. By adapting the scoring of the QOLHEQ using the methods of item response

theory, it was possible to obtain QOLHEQ-values that are comparable across countries.

Cross-cultural variations in the interpretation of single items were resolved. The QOLHEQ is now

ready to be used in international studies assessing the health-related quality of life impact of

hand eczema.

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10

INTRODUCTION

Hand eczema (HE) is a common and multifactorial skin disease (Coenraads, 2012). In the general

population, the 1-year prevalence of HE has been estimated to be as high as 10%, with higher

risk in females and in patients with contact allergy, atopy or exposure to wet work (Thyssen et

al., 2010). Often it is a chronic recurrent or persisting condition with negative socioeconomic

effects, and it has been shown that about 28% of patients with HE of occupational origin are

unfit to work (Diepgen et al., 2009). Health-related quality of life (HRQOL) is negatively affected

in patients with HE (Apfelbacher et al., 2014, Moberg et al., 2009). HRQOL impairments in HE

have been assessed by using generic HRQOL instruments like the EuroQoL-5D (Brooks, 1996)

or by using skin-specific instruments like the Dermatology Life Quality Index (DLQI; Finlay and

Khan (1994)) or Skindex (Chren et al., 1996). The only disease-specific instrument for assessing

HRQOL impairment in HE patients is the Quality of Life in Hand Eczema Questionnaire (QOLHEQ;

Ofenloch et al. (2014)). Although generic and skin-specific instruments enable comparability

with other (skin) diseases, disease-specific instruments assess impairments caused by the

disease of interest more precisely and are therefore more sensitive to change when used in

clinical trials. In its validation study, the QOLHEQ was shown to be valid and reliable, and its

sensitivity to change was superior compared with the EuroQoL-5D, DLQI, and Skindex-29.

Especially in chronic skin disorders clinical severity scores alone, such as the Hand

Eczema Severity Index (Held et al. (2005)) or the Osnabrück Hand Eczema Index (Dulon et al.

(2009)), do not give enough information on the effects of treatments. This is because the clinical

score is rated by a physician, and it is known that those ratings correlate only moderately

with patients’ perception of impairment (Agner et al., 2013, Ofenloch et al., 2015). Therefore,

measures of HRQOL should be integrated as patient reported outcomes in clinical trials.

Cross-cultural aspects have often not been considered enough during the development of many

instruments used in dermatology (Grob, 2007). When patient-reported outcome instruments

are used to assess data in a cross-culturally equivalent manner, this aspect should already have

been accounted for during the development of the instrument.

The development of instruments that assess impairment in HRQOL in a valid manner

across different languages and cultures is essential if one wishes to use such measures in

international, multicenter studies. If clinical trials are performed in several countries, the

scores obtained through a particular instrument are not necessarily comparable across these

countries, as shown by Nijsten et al. (2007) for the DLQI and for Skindex in psoriasis patients.

It is likely that this is true also for other HRQOL instruments, because responses to those

questionnaires are often governed also by social values and norms, which are likely to differ

among countries (Nijsten et al., 2007).

One method to investigate if an instrument produces cross-cultural equivalent data

is to test for differential item functioning (DIF) using the framework of item response theory

(IRT) (Zumbo, 1999). DIF is present when the responses to a specific item from individuals with

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RESULTS

SAMPLE CHARACTERISTICS

Overall, 662 individuals were recruited, with a well-balanced number of 110 ±3 individuals

for each participating country. In the total sample, 61.6% of the individuals were women,

with the highest proportion of women in Japan (75.9%) and the lowest proportion in the

Netherlands (48.2%). Together with Finland, where the fraction of women was 75.5%, those

countries differed significantly from the overall distribution (P < 0.01). The mean age of the

study population was 40.9 years (range = 18-79 years), with the youngest subpopulation in

Turkey (mean = 31.9 years) and the oldest in Germany (mean = 50.5 years). Those two countries

differed significantly from the overall mean (P < 0.01); however, the effect size was rather small

2

< 0.1). The demographic characteristics of the study population are shown in total and

separately for each country in detail in Table 1.

Table 1 Demographic characteristics of the sample

Country Overall n

Sex Age

Male Female

Mean Minimum Maximum SD

n % n % Germany 111 57 51.4 54 48.6 50.501 18.00 78.00 12.19 Sweden 112 38 33.9 74 66.1 38.88 18.00 58.00 11.76 Finland 107 25 24.52 77 75.52 38.87 19.00 70.00 14.86 Turkey 112 48 42.9 64 57.1 31.971 18.00 46.00 7.81 Japan 108 26 24.12 82 75.92 41.73 19.00 79.00 14.07 The Netherlands 112 58 51.82 54 48.22 43.40 18.00 77.00 14.25 Total 662 252 38.4 405 61.6 40.93 18.00 79.00 13.82

Abbreviation: SD, standard deviation .

1Differs significantly from the overall mean (F-test, P < 0.01).

2Differs significantly from the overall distribution (Fisher's exact test, P < 0.01).

SYMPTOMS

The first inspection of the Symptoms subscale showed a significant misfit to the Rasch

Model (RM) (overall χ² = 49.9; df = 28; P < 0.01) and disordered thresholds for the item Itch

and Fissuring. After adjusting those items by merging the response categories Rarely and

Sometimes, the analysis on DIF was performed. Overall the items Pain and Redness showed

relevant DIF (deviation of > 0.5 logits) (Figure 1a and b), and an analysis of DIF for each country

separately showed that this DIF was caused by the Swedish sample. Figure 1c and d show that

at the same level of HRQOL impairment (person location), Swedish people were more likely

to report impairment (expected value) on the item Pain and less likely to report impairment

because of Redness compared with the rest of the sample.

After splitting the scoring of those items for the Swedish subpopulation and retrieving

a separate scoring for this group, the subscale no longer showed significant misfit to the RM

(overall χ² = 53.6; df = 36; P > 0.01). A Person Separation Index (PSI) of 0.79 indicated a good

internal reliability for the adjusted subscale, which can now be used to compare scores among

the participating countries.

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EMOTIONS

Although the emotions subscale showed no initial misfit to the RM (overall χ² = 24.8; df = 32;

P > 0.01), disordered thresholds were detected for the item Anxious. After this item was

adjusted, several items of the scale showed relevant DIF by country: (i) the Swedish subgroup

was less likely to report impairment due to being Annoyed or Embarrassed, whereas (ii) the

Finnish subgroup was more likely to be impaired because of being Anxious about the future,

and (iii) the Turkish subpopulation was less likely to report being Frustrated.

In Figure 2a-d, the DIF is shown as item characteristic curves for these countries compared

with the rest of the sample. By using the RM, the items were split for the corresponding

countries, and country-specific, interval-scaled values were retrieved for Sweden, Finland

and Turkey. The final model showed no significant misfit to the RM (overall χ² = 32.2; df = 48;

P > 0.01) and a PSI of 0.88 indicated an excellent internal reliability for the adjusted subscale.

FUNCTIONING

In the primary analysis with the RM, the Functioning subscale showed no significant misfit

to the RM (overall χ² = 34.2; df = 32; P > 0.01), and no disordered thresholds. Five items of

the subscale showed relevant DIF. Individual analysis by country showed that although the

Swedish subpopulation showed a slightly higher likelihood for scoring higher at the item

of being impaired in Washing, the DIF in the four other items was caused by the Turkish

subpopulation (Figure 3). Individuals of the Turkish subpopulation were, compared with those

from other countries at the same level of HRQOL impairment, less likely to report problems in

doing Home duties or Hobbies, but, on the other hand, more likely to experience impairment

because of Avoiding contact with others or while Touching family.

Nevertheless all five items could be split using the RM, and country-specific,

interval-scaled values were retrieved for Sweden and Turkey. The final model showed no significant

misfit to the RM (overall χ² = 71.4; df = 52; P > 0.01) and a PSI equal to 0.83 also indicated good

internal reliability for the adjusted subscale.

TREATMENT AND PREVENTION

The Treatment and Prevention subscale showed no significant misfit to the RM initially (overall

χ² = 21.6; df = 28; P > 0.01), but disordered thresholds were found for the item for feeling

impaired because of Visiting physicians. After adjusting the response categories for this item,

significant DIF was found in the analysis where all countries were tested in parallel (Figure 4a).

Individual analysis for each country showed that this DIF was relevant for Sweden, Turkey, and

Japan (Figure 4b-d). The Swedish subgroup was less likely to be impaired because of Visiting

physicians, whereas the likelihood for the Turkish and Japanese subgroups to be impaired on

this item was higher (Figure 4).

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results across countries. Although one item was removed from the subscale, the final model

showed no significant misfit to the RM (overall χ² = 14.5; df = 24; P > 0.01), and the internal

reliability remained good (PSI=0.74).

Figure 1 Item characteristic curves. Items (a, c) pain

and (b, d) redness by country. ExpV, expected value.

Figure 2 Item characteristic curves plotted by country.

For the items of the Emotion subscale showing relevant differential item functioning by country: (a) annoyed by Sweden; (b) nervous by Sweden; (c) anxious by Finland; and (d) frustrated by Turkey. ExpV, expected value.

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10

STRUCTURAL EQUATION MODEL AND SCORING OF THE QOLHEQ

Figure 3 Item characteristic curves. For the items of

the Functioning subscale showing relevant differential item functioning for Turkey: (a) doing homework; (b) hobbies; (c) avoiding contact with other people; and (d) toucing family or partner. ExpV, expected value.

Figure 4 Item characteristic curves. For the item visiting a phycisian for (a) each country; (b) Sweden; (c) Turkey; and

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country) in Table S1 in the supplement. However, to use an HRQOL measure with this high

precision for international comparison, great effort is needed to perform the scoring of the

instrument: first, the raw scores need to be created (giving values from 0-4 [Table S2 in the

supplement] for each answer on the QOLHEQ and summing them up by subscale), then each of

those scores needs to be translated into country-specific values (Table S1 in the supplement),

which leads to a rescoring of 278 values overall. This virtually cannot be performed without

using modern statistical software. To enhance the use of the QOLHEQ with precise values for

international comparison, an SPSS-Syntax, performing the QOLHEQ-scoring by considering all

those aspects and additionally transforming each subscale to a score with a range from 0-100

can be downloaded together with the different language versions of the QOLHEQ at

www.qolheq.dermis.net or found in the Supplementary Material.

EFFECTS OF THE CROSS-CULTURAL ADJUSTMENTS

To visualize the effects that a cross-culturally inequivalent measurement can have on

international comparisons, the mean values of the QOLHEQ before and after the adaption are

given by country in Table 2. We assessed whether a QOLHEQ mean of a given country differed

significantly from the QOLHEQ mean of the remaining countries. Before rescoring, the German

and Dutch population showed a significantly decreased mean in the Emotion subscale; after

adapting for DIF, those effects disappeared – in case of the Dutch population, the value was

even slightly increased (although not significant). On the other hand, the Japanese and Finnish

populations showed no significant deviation before adapting for DIF; afterwards, the values

were significantly higher for the Japanese and significantly lower for the Finnish population.

Table 2 Mean values for each subscale of the Quality Of Life in Hand Eczema Questionnaire by country before (raw score)

and after (value) cross-cultural adaptation1,2

Symptoms Emotions Functions Treatment

Country Raw score Value Raw score Value Raw score Value Raw score Value

Germany Mean 45,65 46,50 36,12 30,60 33,02 42,78 43,43 44,23 SD 21,38 14,57 22,54 22,08 22,17 18,92 20,86 16,84 Sweden Mean 52,88 52,32 42,80 32,38 43,28 49,80 48,18 48,67 SD 19,43 14,28 23,00 24,20 22,64 17,95 20,43 16,80 Finland Mean 56,73 53,70 43,26 29,83 35,43 45,28 49,29 49,14 SD 20,51 14,04 21,52 20,72 21,70 18,13 19,69 14,60 Turkey Mean 64,29 59,61 57,11 36,57 50,67 55,38 67,46 65,18 SD 20,82 15,77 26,77 26,99 26,34 18,31 21,96 18,20 Japan Mean 55,93 53,39 41,82 38,28 39,76 48,55 48,56 48,94 SD 19,17 13,30 21,78 22,24 21,79 16,57 19,53 15,00 The Netherlands Mean 49,87 48,77 37,85 37,55 38,42 47,57 42,13 45,35 SD 20,78 14,13 20,06 20,76 20,34 15,95 18,48 15,46 Total Mean 54,21 52,38 43,18 34,22 40,14 48,26 49,87 50,29 SD 21,12 14,91 23,64 23,12 23,22 18,04 21,80 17,60

Abbreviation: SD, standard deviation.

1Scores transformed to a range from 0 - 100.

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10

DISCUSSION

The QOLHEQ is the only instrument to assess disease-specific HRQOL in patients with HE, and

it can now be used for the comparison of HRQOL impairment in international clinical trials

or epidemiological studies using the German, Dutch, Finnish, Swedish, Japanese and Turkish

versions of the QOLHEQ. In this validation study, we applied the methods of modern test theory,

which are now widely accepted as new standard in the dermatological community for assessing

patient-reported outcomes (Liu et al., 2016; Nijsten et al., 2006, 2007; Tennant et al., 2004; Twiss

et al., 2012). We were able to show that a cross-cultural inequivalent measurement can lead

to false conclusions about differences among populations. This highlights the importance

of applying methods of modern test theory and testing for DIF before drawing international

comparisons with a given measure. Still, the differences presented in Table 2 should not be

interpreted as representative for the whole countries investigated, because we obtained

only convenience samples and did not collect information on reasons for nonparticipation or

clinical characteristics of the patients included.

Other dermatology-specific HRQOL instruments have shown cross-cultural

in-equivalence; however, no adaption was performed to those scales in order to obtain comparable

values (Nijsten et al., 2007). According to the definition of Nijsten et al., the QOLHEQ can

now be considered as a third-generation instrument for assessing HRQOL, because detailed

information is given about dimensionality and response categories and an adaption for DIF

was performed (Nijsten, 2012).

To our knowledge, this is the first study assessing cross-cultural aspects of HRQOL

in a sample of dermatological patients from six countries. The strength of this study is that

those aspects have been investigated in a sample of 662 patients with HE, who were equally

distributed across countries so as not to overweight the impact of a single culture in the

analysis. However, sampling within each country did not occur at random. As described,

patients were sampled in a consecutive manner in the different centers. Still, random sampling

would have been impossible, largely because the totality of HE patients is unknown; therefore,

drawing a random sample did not seem to be possible. Further, it would have been beneficial

to include other language versions of the QOLHEQ in this study. We acknowledge that we

have no representation from Africa, Latin America, and Oceania. These languages need to be

investigated in future studies.

Although we found some variations in the demographic characteristics of the

participating centers, it was not expected that this affected the following DIF analyses on

cross-cultural equivalence, because an assessment of DIF by age groups and sex in the German

validation study showed that there was no significant DIF for the QOHEQ in those categories

(Ofenloch et al., 2014). With the results of this international/cross-cultural validation study,

the QOLHEQ is the first HRQOL instrument in dermatology with country-specific values that

account for DIF between countries. However, further investigations of the QOLHEQ are needed

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population is still the one presented in German validation study [Ofenloch et al., 2014]).

Therefore, national validation studies are needed to achieve the best psychometric properties

for the instrument and the highest precision in measuring HRQOL in HE patients at country

level. Ideally, in the future, studies using the QOLHEQ should report both national and

international values.

MATERIALS AND METHODS

THE QOLHEQ

The QOLHEQ was developed by an international expert group consisting of health scientists

and dermatologists with special expertise in HE from Australia, Denmark, Finland, Germany,

Japan, and Sweden. The development process was performed by this international group

to build items that assess HRQOL in a cross-culturally equivalent manner, enabling the

comparison of HRQOL impairment across countries. To receive a valid instrument covering all

relevant aspects of HRQOL, patients suffering from HE were also involved in the development

process through standardized questionnaires and focus groups. The translation process was

then performed according to international guidelines, which are described in detail elsewhere

(Oosterhaven et al., in press). The QOLHEQ consists of 30 items and assesses disease-specific

HRQOL in HE patients using four scales covering impairment because of (i) symptoms, (ii)

emotions, (iii) functioning and (iv) treatment/prevention. A large validation study carried out

in German HE patients, showed the QOLHEQ to be a valid, reliable, and sensitive measure for

assessing HRQOL in that population (Ofenloch et al., 2014).

SAMPLING

The HE patients participating in this international study were recruited consecutively at the

North Karelia Central Hospital in Joensuu (Finland), University Hospital Heidelberg (Germany),

the hospital and private clinics in Kumamoto (Japan), the University Medical Center Groningen

(the Netherlands), Skåne University Hospital in Lund (Sweden), and Uludag University

Medical Faculty Bursa and Sakarya University Medical Faculty Adapazar (Turkey). The study

was approved by the local institutions, and written informed consent was received from all

subjects included. Because an unbalanced sample size among groups might affect analyses of

variances (Shaw and Mitchell-Olds, 1993) we aimed at recruiting a balanced sample of about

110 subjects per group. Each center consecutively recruited all patients with active HE and

a history of HE within the last week into the study. An exclusion criterion was age younger

than 18 years. According to the rules of the developers (Ofenloch et al., 2014), data were

excluded from analysis if data for more three items of the QOLHEQ were missing. This lead to

an exclusion of 26 participants, who were equally distributed across the countries. It was only

in the Japanese dataset that there were no missing data overall.

STATISTICAL ANALYSIS

Basic statistical calculations were performed using SPSS 23 (IBM, Armonk, NY). As a method

of IRT, a Rasch analysis with the partial credit model (Masters, 1982) was performed for each

subscale separately using RUMM2030 (Rumm Laboratory Pty. Ltd., Duncraig, Western Australia,

Australia). The initial scoring of the QOLHEQ in this analysis was performed according to the

results of the primary validation study (Ofenloch et al., 2014). In a first step, the overall fit to the

RM was assessed by (i) using a χ²-test for the item-trait interaction, (ii) checking for disordered

thresholds of the item categories, and (iii) assessing the fit residuals for item mean interaction.

To receive results comparable with the analysis of the primary validation study (Ofenloch et

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10

al., 2014), the test was performed with an adjusted sample size of n = 350 using the

χ²-test-adjustment function in RUMM2030. If a disordered threshold was detected, a rescoring of

single items was performed, to gain fit of the subscale to the RM. The fit of the final model to

the RM was again assessed using a χ² test over the item-trait interaction. The internal reliability

of each subscale was assessed using the PSI. A value of PSI greater than 0.7 was considered to

be evidence for good internal reliability.

After adjusting the subscales to resolve disordered thresholds, an analysis of variance

was performed to assess cross-cultural equivalence by testing for DIF among countries. We ran

this analysis in two steps: (i) we tested DIF for each item among all countries in parallel (ii) we

tested DIF for each country compared with the rest of the sample separately to identify the

language version that actually caused the DIF for a specific item. The second analysis step was

done to enhance interpretation of DIF for items showing DIF in the first step of the analysis. At

an international meeting of the developers of the QOLHEQ, it was decided to assess, in addition

to the significance of DIF, the magnitude of the deviation in terms of the fit residuals by country

for each item showing DIF. The fit residual is the mean deviation of the response pattern for

an item by country on a logit-scale. In case of uniform DIF a deviation of +0.5 logits indicates

that an individual in one country is about 20% more likely to score one response category

higher on a specific item compared with an individual with the same degree of impairment

from another country in the sample. It was decided that a mean deviation of greater than 0.5

logits for a subscale is defined as clinically relevant DIF, which was adjusted for in the ongoing

analysis.

The adjustment for DIF was performed by splitting items for the calculation of the

Rasch estimates, which means that those items are rendered unique for the groups showing

DIF (Tennant et al., 2004). If, for example, an item shows DIF for Sweden, it is split into one

separate item for Sweden containing missing values for all other countries and one item for

all the other countries (which contains missing values for Sweden). This way, separate location

and threshold values can be calculated for this item by country.

Before and after the rescoring of the subscales, the QOLHEQ was introduced into a

structural equation model using AMOS 23 (IBM) representing all four domains and the higher

order factor HRQOL in one model. This was done to assess if the raw scores of the QOLHEQ

in a sample of all countries combined still represented a valid multidimensional construct of

HRQOL, as shown in the German validation study (Ofenloch et al., 2014).

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Twiss J, Meads DM, Preston EP, Crawford SR, McKenna SP. Can we rely on the Dermatology Life Quality Index as a measure of the impact of psoriasis or atopic dermatitis? J Invest Dermatol 2012;132(1):76-84.

Zumbo BD. A handbook on the theory and methods of differential item functioning (DIF). Ottawa: National Defense Headquarters 1999.

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Table S1 Rasch-transformed values (location) for the QOLHEQ raw scores by country.

  Symptoms Emotions Functioning

Treatment & Prevention Raw

subscale score

Location Location Sweden Location Location Finland Location Sweden Location Turkey Location Location Sweden Location Turkey Location

0 -3.962 -3.649 -4.010 -3.635 -3.705 -3.265 -3.948 -4.072 -3.269 -2.944 1 -3.273 -3.173 -3.446 -3.296 -3.210 -2.921 -3.122 -3.268 -2.558 -2.450 2 -2.584 -2.697 -2.882 -2.957 -2.715 -2.577 -2.555 -2.708 -2.082 -1.956 3 -2.097 -2.221 -2.482 -2.618 -2.220 -2.183 -2.165 -2.359 -1.764 -1.620 4 -1.727 -1.829 -2.161 -2.279 -1.892 -1.873 -1.863 -2.010 -1.519 -1.357 5 -1.429 -1.487 -1.886 -1.990 -1.612 -1.614 -1.612 -1.751 -1.331 -1.134 6 -1.177 -1.185 -1.642 -1.735 -1.364 -1.388 -1.395 -1.525 -1.143 -0.935 7 -0.955 -0.918 -1.420 -1.503 -1.140 -1.185 -1.201 -1.322 -0.987 -0.750 8 -0.754 -0.681 -1.215 -1.290 -0.933 -1.000 -1.024 -1.137 -0.844 -0.574 9 -0.566 -0.466 -1.022 -1.091 -0.738 -0.825 -0.861 -0.966 -0.711 -0.403 10 -0.388 -0.267 -0.839 -0.903 -0.554 -0.659 -0.707 -0.806 -0.585 -0.236 11 -0.215 -0.078 -0.662 -0.722 -0.377 -0.498 -0.561 -0.654 -0.464 -0.071 12 -0.045 0.103 -0.491 -0.548 -0.207 -0.340 -0.421 -0.510 -0.348 0.094 13 0.126 0.281 -0.322 -0.377 -0.042 -0.183 -0.285 -0.370 -0.235 0.258 14 0.299 0.458 -0.155 -0.208 0.119 -0.026 -0.153 -0.234 -0.125 0.425 15 0.477 0.638 0.013 -0.039 0.277 0.132 -0.024 -0.101 -0.016 0.594 16 0.662 0.824 0.181 0.130 0.433 0.293 0.105 0.030 0.091 0.770 17 0.858 1.019 0.351 0.301 0.588 0.458 0.233 0.161 0.198 0.956 18 1.069 1.226 0.524 0.474 0.743 0.622 0.361 0.292 0.305 1.157 19 1.299 1.451 0.699 0.651 0.901 0.792 0.490 0.424 0.412 1.385 20 1.557 1.700 0.878 0.831 1.062 0.965 0.621 0.559 0.522 1.655 21 1.851 1.982 1.061 1.015 1.230 1.142 0.756 0.696 0.635 1.997 22 2.199 2.316 1.250 1.205 1.406 1.325 0.895 0.841 0.752 2.494 23 2.634 2.735 1.446 1.403 1.593 1.516 1.040 0.986 0.876   24 3.244 3.328 1.653 1.611 1.797 1.719 1.193 1.141 1.008   25 3.854 3.921 1.877 1.836 2.022 1.938 1.357 1.315 1.151   26     2.126 2.087 2.280 2.185 1.535 1.489 1.310   27     2.419 2.380 2.588 2.475 1.750 1.690 1.490   28     2.788 2.748 2.983 2.843 1.965 1.922 1.699   29     3.123 3.281 3.378 3.377 2.243 2.154 1.954   30       2.604 2.386 2.286   31       2.965 2.618 2.618   32       3.326 2.850 2.950  

SUPPLEMENTARY MATERIAL

Figure S1 Structural equation model (SEM) of the rescored QOLHEQ the numbers in the squares refer to the

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10

Table S1 Rasch-transformed values (location) for the QOLHEQ raw scores by country.

  Symptoms Emotions Functioning

Treatment & Prevention Raw

subscale score

Location Location Sweden Location Location Finland Location Sweden Location Turkey Location Location Sweden Location Turkey Location

0 -3.962 -3.649 -4.010 -3.635 -3.705 -3.265 -3.948 -4.072 -3.269 -2.944 1 -3.273 -3.173 -3.446 -3.296 -3.210 -2.921 -3.122 -3.268 -2.558 -2.450 2 -2.584 -2.697 -2.882 -2.957 -2.715 -2.577 -2.555 -2.708 -2.082 -1.956 3 -2.097 -2.221 -2.482 -2.618 -2.220 -2.183 -2.165 -2.359 -1.764 -1.620 4 -1.727 -1.829 -2.161 -2.279 -1.892 -1.873 -1.863 -2.010 -1.519 -1.357 5 -1.429 -1.487 -1.886 -1.990 -1.612 -1.614 -1.612 -1.751 -1.331 -1.134 6 -1.177 -1.185 -1.642 -1.735 -1.364 -1.388 -1.395 -1.525 -1.143 -0.935 7 -0.955 -0.918 -1.420 -1.503 -1.140 -1.185 -1.201 -1.322 -0.987 -0.750 8 -0.754 -0.681 -1.215 -1.290 -0.933 -1.000 -1.024 -1.137 -0.844 -0.574 9 -0.566 -0.466 -1.022 -1.091 -0.738 -0.825 -0.861 -0.966 -0.711 -0.403 10 -0.388 -0.267 -0.839 -0.903 -0.554 -0.659 -0.707 -0.806 -0.585 -0.236 11 -0.215 -0.078 -0.662 -0.722 -0.377 -0.498 -0.561 -0.654 -0.464 -0.071 12 -0.045 0.103 -0.491 -0.548 -0.207 -0.340 -0.421 -0.510 -0.348 0.094 13 0.126 0.281 -0.322 -0.377 -0.042 -0.183 -0.285 -0.370 -0.235 0.258 14 0.299 0.458 -0.155 -0.208 0.119 -0.026 -0.153 -0.234 -0.125 0.425 15 0.477 0.638 0.013 -0.039 0.277 0.132 -0.024 -0.101 -0.016 0.594 16 0.662 0.824 0.181 0.130 0.433 0.293 0.105 0.030 0.091 0.770 17 0.858 1.019 0.351 0.301 0.588 0.458 0.233 0.161 0.198 0.956 18 1.069 1.226 0.524 0.474 0.743 0.622 0.361 0.292 0.305 1.157 19 1.299 1.451 0.699 0.651 0.901 0.792 0.490 0.424 0.412 1.385 20 1.557 1.700 0.878 0.831 1.062 0.965 0.621 0.559 0.522 1.655 21 1.851 1.982 1.061 1.015 1.230 1.142 0.756 0.696 0.635 1.997 22 2.199 2.316 1.250 1.205 1.406 1.325 0.895 0.841 0.752 2.494 23 2.634 2.735 1.446 1.403 1.593 1.516 1.040 0.986 0.876   24 3.244 3.328 1.653 1.611 1.797 1.719 1.193 1.141 1.008   25 3.854 3.921 1.877 1.836 2.022 1.938 1.357 1.315 1.151   26     2.126 2.087 2.280 2.185 1.535 1.489 1.310   27     2.419 2.380 2.588 2.475 1.750 1.690 1.490   28     2.788 2.748 2.983 2.843 1.965 1.922 1.699   29     3.123 3.281 3.378 3.377 2.243 2.154 1.954   30       2.604 2.386 2.286   31       2.965 2.618 2.618   32       3.326 2.850 2.950  

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Table S2 Assigning the raw scores for each subscale

Item No. Short description of the item (never – rarely – sometimes – often –always)Raw score

Symptoms 1 pain 0 – 1 – 2 – 3 – 4 6* itch 0 – 1 – 1 – 2 – 3 9 affecting sleep 0 – 1 – 2 – 3 – 4 11* fissuring 0 – 1 – 1 – 2 – 3 20 redness 0 – 1 – 2 – 3 – 4 23 bleeding 0 – 1 – 2 – 3 – 4 28* dryness 0 – 1 – 1 – 2 – 3 Emotions 5 frustrated 0 – 1 – 2 – 3 – 4 8 annoying 0 – 1 – 2 – 3 – 4 10* anxious 0 – 1 – 1 – 2 – 2 16 hide hands 0 – 1 – 2 – 3 – 4 19 sad/depressed 0 – 1 – 2 – 3 – 4 21 irritated 0 – 1 – 2 – 3 – 4 27 embarrassed 0 – 1 – 2 – 3 – 4 30 nervous 0 – 1 – 2 – 3 – 4 Functioning 2 job 0 – 1 – 2 – 3 – 4 3 homework 0 – 1 – 2 – 3 – 4 12 hobbies 0 – 1 – 2 – 3 – 4 14 washing 0 – 1 – 2 – 3 – 4 15 dressing 0 – 1 – 2 – 3 – 4 17 social contacts 0 – 1 – 2 – 3 – 4 25 family 0 – 1 – 2 – 3 – 4 29 partner 0 – 1 – 2 – 3 – 4

Treatment & Prevention

4* wearing gloves 0 – 1 – 1 – 2 – 3 7 time consuming 0 – 1 – 2 – 3 – 4 13 creams 0 – 1 – 2 – 3 – 4 18** visiting physicians 0 – 0 – 0 – 0 – 0 22 avoiding contact 0 – 1 – 2 – 3 – 4 24 side effects 0 – 1 – 2 – 3 – 4 26 costs 0 – 1 – 2 – 3 – 4 * Scoring of this item is deviating because answer categories were joined. ** This item was removed from the scoring of the scale.

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10

Health Questionnaire

for hand eczema patients

I have been bothered by the skin

condition of my hands… never rarely sometimes often all the time

… being painful.     

restricting/impairing me in my job.     

restricting/impairing me in doing

everyday home duties.     

… because I have to wear gloves.     

… making me feel frustrated.     

itching.     

… because treatment is time consuming.     

… making me feel annoyed.     

… causing loss of sleep.     

Please indicate how often you were bothered by the following situations during the last seven days:

English language version, before using please contact

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© QOLHEQ-group 2016. Do not copy without permission.

Health Questionnaire

for hand eczema patients

I have been bothered by the skin

condition of my hands… never rarely sometimes often all the time

fissuring.     

restricting/impairing me in my leisure

time activities (e.g. sports, hobbies)     

… because I have to use creams.     

… causing problems washing myself.     

… causing problems dressing myself.      … making me feel I have to hide my hands.      … because it leads to me avoiding contact

with other people.     

… because I have to visit a physician.     

… making me feel sad / depressed.     

… because of redness     

2 of 3

Please refer to the last 7 days and to the skin of your hands only!

English language version, before using please contact

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10

Health Questionnaire

for hand eczema patients

I have been bothered by the skin

condition of my hands… never rarely sometimes often all the time

… making me feel irritated.     

… because I have to avoid contact with

certain things.     

bleeding.     

… because of worrying about side

effects of treatment.     

affecting my family life and

friendships.     

… because of the treatment costs I have

to cover myself.     

… making me feel embarrassed.     

… because of dryness.     

… when touching my family or partner.     

Please refer to the last 7 days and to the skin of your hands only!

English language version, before using please contact

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© QOLHEQ-group 2016. Do not copy without permission.

Gezondheidsvragenlijst

voor patiënten met handeczeem

Ik heb last gehad van mijn handeczeem, … nooit zelden nu en dan vaak altijd … omdat de huid aan mijn handen pijnlijk is.

… omdat het mij beperkt/belemmert tijdens mijn

werk.

… omdat het mij beperkt/belemmert tijdens mijn

dagelijkse huishoudelijke taken.

… omdat ik handschoenen moet dragen.

… omdat het me frustreert.

… omdat de huid aan mijn handen jeukt.

… omdat de behandeling veel tijd kost.

… omdat het me ergert.

… omdat het slaapgebrek veroorzaakt.

… omdat het me angstig maakt voor de toekomst.

1 van 3

Wilt u aangeven hoe vaak u in de afgelopen 7 dagen last heeft gehad van de volgende situaties:

Dutch language version, before using please contact

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10

Gezondheidsvragenlijst

voor patiënten met handeczeem

Ik heb last gehad van mijn handeczeem, … nooit zelden nu en dan vaak altijd … omdat de huid aan mijn handen kloven heeft.

… omdat het mij beperkt/belemmert in mijn vrije

tijd (bijv. sporten, hobby’s).

… omdat ik crèmes/ zalven moet gebruiken.

… omdat het mij beperkt/belemmert als ik mij

was.

… omdat het mij beperkt/belemmert als ik me

aankleed.

… omdat het mij het gevoel geeft dat ik mijn handen

moet verstoppen.

… omdat ik hierdoor contact met andere mensen

vermijd.

… omdat ik een arts moet bezoeken.

… omdat het me verdrietig/ teneergeslagen

maakt.

De vragenlijst gaat over de afgelopen 7 dagen en alleen over de huid aan uw handen!

Dutch language version, before using please contact

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© QOLHEQ-group 2016. Do not copy without permission.

Gezondheidsvragenlijst

voor patiënten met handeczeem

Ik heb last gehad van mijn handeczeem, … nooit zelden nu en dan vaak altijd

… omdat het me prikkelbaar maakt.

… omdat ik contact met bepaalde dingen moet

vermijden.

… omdat de huid aan mijn handen bloedt.

… omdat ik me zorgen maak over bijwerkingen

van de behandeling.

… omdat het mijn gezinsleven en vriendschappen

beïnvloedt.

… door behandelkosten die ik zelf moet betalen.

… omdat ik me schaam.

… omdat de huid aan mijn handen droog is.

… als ik mijn familie of partner aanraak.

… omdat het me nerveus maakt.

3 van 3

De vragenlijst gaat over de afgelopen 7 dagen en alleen over de huid van uw handen!

Dutch language version, before using please contact

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10

Gesundheitsfragebogen

für Handekzempatienten

Ich fühle mich durch die Haut an meinen

Händen beeinträchtigt, … nie selten manchmal oft immer … weil die Haut an meinen Händen schmerzt.      … weil ich deswegen bei meiner beruflichen

Tätigkeit eingeschränkt bin.     

… weil ich deswegen bei meiner alltäglichen

Hausarbeit eingeschränkt bin.     

… weil ich deswegen Handschuhe tragen muss.

    

… weil ich deswegen frustriert bin.      … weil die Haut an meinen Händen juckt.      … weil der Zeitaufwand für die Behandlung

hoch ist.     

… weil ich mich deswegen ärgere/aufrege.      … weil ich deswegen nicht mehr so gut schlafe.     

Bitte geben Sie an wie häufig die folgenden Aussagen in Bezug auf die letzten sieben Tage auf Sie zutreffen:

German language version, before using please contact

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© QOLHEQ-group 2016. Do not copy without permission.

Gesundheitsfragebogen

für Handekzempatienten

Ich fühle mich durch die Haut an meinen

Händen beeinträchtigt, … nie selten manchmal oft immer … weil die Haut an meinen Händen leicht

einreißt.     

… weil ich deswegen bei Freizeitaktivitäten

eingeschränkt bin (z.B. Sport, Hobbys).     

weil ich Cremes benutzen muss.     

… weil ich deswegen Probleme habe, mich zu

waschen.     

… weil ich deswegen Probleme habe, mich

anzuziehen.     

… weil ich deswegen meine Hände manchmal

verstecken muss.     

… weil ich deswegen den Kontakt mit anderen

Menschen meide.     

… weil ich deswegen Ärzte aufsuchen muss.      … weil ich deswegen traurig/deprimiert bin.      … weil die Haut an meinen Händen gerötet ist.     

2 von 3

Bitte beziehen Sie ihre Antworten nur auf die letzten 7 Tage und den Hautzustand an ihren Händen!

German language version, before using please contact

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10

Gesundheitsfragebogen

für Handekzempatienten

Ich fühle mich durch die Haut an meinen

Händen beeinträchtigt, … nie selten manchmal oft immer

... weil ich deswegen gereizt bin.     

… weil ich den Hautkontakt mit einigen Dingen

vermeiden muss.     

… weil die Haut an meinen Händen blutet.      … weil ich mir Sorgen um die Nebenwirkungen

durch die Behandlung mache.     

… weil deswegen meine Beziehung zu Familie

und Freunden beeinträchtigt wird.     

weil ich Kosten für die Behandlung selbst

tragen muss.     

… weil ich mich deswegen geschämt habe.      … weil die Haut an meinen Händen trocken ist.      … wenn ich Familienmitglieder oder meinen

Partner berühren will.     

Bitte beziehen Sie ihre Antworten nur auf die letzten 7 Tage und den Hautzustand an ihren Händen!

German language version, before using please contact

(27)

© QOLHEQ-group 2016. Do not copy without permission.

手湿疹についてのアンケート

ここ1週間で、あなたが不快に感じた手の皮膚の状態についてお伺いします。最も当 てはまるものに、印  をつけて下さい。 手について、以下のようなことで不快 に感じた 全く なかった ほとん どなか った ときどき あった しばしば あった いつもそう だった 痛みがあった      仕事に支障があった      毎日の家事や家の仕事をするのに支障 があった      手袋をつけなくてはならなかった      いらだたしく、もどかしい気持ちにな った      痒みがあった      治療や手入れに時間を取られた      うっとおしく感じた      よく眠れなかった      将来が不安になった 1/3

Japanese language version, before using please contact

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10

手湿疹のある方の健康についてのアンケート 手について、以下のようなことで不快 に感じた 全く なかった ほとんど なかった ときどき あった しばしば あった いつもそう だった ひび割れがあった      自由時間を過ごすのに支障があった (スポーツ、楽器の演奏、趣味など)      軟膏やハンドクリームを使わなければ ならなかった      手や体を洗うのに支障があった      着替えに支障があった      手を隠さなければいけないと感じた      人と会うのを避けるようになった      医者にかからなければならない      悲しくなったり、気持が落ちこんだり した      ここ一週間の、あなたの手の皮膚だけについてお答えください。

Japanese language version, before using please contact

(29)

© QOLHEQ-group 2016. Do not copy without permission. 手湿疹のある方の健康についてのアンケート 手について、以下のようなことで不快に 感じた 全く なかった ほとんど なかった ときどき あった しばしば あった いつもそう だった いらいらした      皮膚症状を悪化させるものに触れるのを 避けなければならなかった      出血した      治療の副作用が心配になった      家庭生活や友人関係の妨げになった 治療ための金銭的負担がある      恥ずかしい思いをした      皮膚が乾燥した      家族やパートナーに触れるとき気になっ た      神経質な気分になった      3/3 ここ一週間の、あなたの手の皮膚だけについてお答えください。

Japanese language version, before using please contact

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10

Terveyskysely

Käsi-ihottumapotilaille

Minua on vaivannut

käsi-ihottumani aiheuttama(t)...

lainkaan Harvoin Ei Silloin tällöin Usein Jatkuvasti

kipu     

rajoitukset /esteet työssäni     

rajoitukset /esteet päivittäisissä

kotitöissä     

suojakäsineiden käytön tarve     

turhautuminen     

kutina     

hoitamiseen kulunut aika     

kiusa     

unen puute     

Kuinka usein seuraavat asiat ovat vaivanneet sinua viimeksi kuluneiden 7 päivän aikana:

Finnish language version, before using please contact

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© QOLHEQ-group 2016. Do not copy without permission.

Terveyskysely

Käsi-ihottumapotilaille

Minua on vaivannut

käsi-ihottumani aiheuttama(t)...

lainkaan HarvoinEi Silloin tällöin Usein Jatkuvasti

… ihon halkeilu     

rajoitukset /esteet vapaa-ajan harrastuksissa (esim. urheilu, käsityöt,

soittaminen)     

ihovoiteiden ja rasvojen käytön

tarve     

… hankaluudet pesuissa,

saunomisessa     

… hankaluudet pukeutumisessa     

… tunne siitä, että kädet täytyy

piilottaa katseilta     

… tunne siitä, että en voi voi olla

tekemisissä muiden ihmisten kanssa     

… tarve käydä lääkärissä     

alakulo, masennus     

… ihon punoitus     

2/3

Kuinka usein seuraavat asiat ovat vaivanneet sinua viimeksi kuluneiden 7 päivän aikana:

Finnish language version, before using please contact

(32)

10

Terveyskysely

Käsi-ihottumapotilaille

Minua on vaivannut

käsi-ihottumani aiheuttama(t)...

lainkaan HarvoinEi Silloin tällöin Usein Jatkuvasti

ärtyneisyys     

rajoitukset tiettyjen aineiden tai

materiaalien koskettamisessa     

verenvuoto     

… huoli hoidon aiheuttamista

sivuvaikutuksista     

… huoli vaikutuksesta perhe- ja muihin

ihmissuhteisiin     

hoitokulujen määrä     

kiusaantuminen muiden joukossa     

ihon kuivuus     

… ongelmat perheenjäseniä ja puolisoa

Kuinka usein seuraavat asiat ovat vaivanneet sinua viimeksi kuluneiden 7 päivän aikana:

Finnish language version, before using please contact

(33)

© QOLHEQ-group 2016. Do not copy without permission.

Frågeformulär om hälsa

för patienter med handeksem

Jag är besvärad av hudåkomman på mina

händer… Aldrig Sällan Ibland Ofta Hela tiden

… som gör ont.     

… som begränsar/försämrar mig i mitt arbete.     

… som begränsar/försämrar mig i det dagliga

hushållsarbetet     

… därför att jag behöver använda handskar.     

… som gör att jag känner mig frustrerad.     

… som kliar.     

… därför att behandlingen är tidskrävande.     

… som gör att jag känner mig förargad.     

… som orsakar sömnproblem.     

… som gör att jag känner mig orolig för

framtiden.     

1 av 3

Var vänlig och tänk på att svaren skall handla om de senaste sju dagarna och bara om huden på dina händer!

Swedish language version, before using please contact

(34)

10

Frågeformulär om hälsa

för patienter med handeksem

Jag är besvärad av hudåkomman på

mina händer… Aldrig Sällan Ibland Ofta Hela tiden

… som ger mig sprickor.      … som begränsar/försämrar mig i mina

fritidsaktiviteter (t.ex. sport, spela ett

instrument, hobbies)

    

… därför att jag behöver använda krämer.      … som orsakar problem när jag tvättar mig.

    

… som orsakar problem när jag klär mig.     

… som ger mig känslan att jag behöver

gömma mina händer.     

… därför att det leder till att jag undviker

kontakt med andra människor.     

… därför att jag behöver träffa en läkare.     

Var vänlig och tänk på att svaren skall handla om de senaste sju dagarna och bara om huden på dina händer!

Swedish language version, before using please contact

(35)

© QOLHEQ-group 2016. Do not copy without permission.

Frågeformulär om hälsa

för patienter med handeksem

Jag är besvärad av hudåkomman på

mina händer… Aldrig Sällan Ibland Ofta tiden Hela

… som gör att jag känner mig irriterad.     

… därför att jag behöver undvika kontakt

med vissa saker.     

… som blöder.     

… därför att jag är orolig för biverkningar av

behandlingen.     

… som påverkar mitt familjeliv och

vänskapsrelationer.     

… på grund av behandlingskostnaderna som

jag behöver betala själv.     

… som gör att jag känner mig generad.     

… på grund av torrheten.     

… när jag rör vid min familj eller partner     

… som gör att jag känner mig nervös.     

3 av 3

Var vänlig och tänk på att svaren skall handla om de senaste sju dagarna och bara om huden på dina händer!

Swedish language version, before using please contact

(36)

10

El ekzeması hastaları için

Sağlık anketi

Ellerimdeki durumdan rahatsızım

çünkü……. zaman Hiçbir Nadiren Bazen Sıklıkla zaman Her

… ağrılı.     

……işimden alıkoyuyor /çalışırken beni

kısıtlıyor.     

… günlük ev işlerimi yapmama engel

oluyor.     

… eldiven giymek zorunda bırakıyor.     

… amaçladığım şeyleri yapmama engel

oluyor.     

… kaşınıyor.     

… çünkü tedavisi zaman alıcı.     

… huzursuz hissetmeme neden oluyor.     

Lütfen son 7 gün boyunca aşağıdaki durumlardan ne kadar sıklıkla etkilendiğinizi belirtiniz:!

Turkish language version, before using please contact

(37)

© QOLHEQ-group 2016. Do not copy without permission.

El ekzeması hastaları için

Sağlık anketi

Ellerimdeki durumdan rahatsızım

çünkü……. zaman Nadiren Bazen Sıklıkla Hiçbir zaman Her

… derimde çatlamalara yol açıyor.      … serbest zaman aktivitelerime (spor

yapmak, enstrüman çalmak, hobiler gibi) engel

oluyor.     

… krem kullanmak zorunda bırakıyor.     

… yıkanırken problem yaratıyor.     

… giyinirken problem yaratıyor.     

… ellerimi saklamak zorundaymışım gibi

hissettiriyor.     

… insanlarla iletişim kurmaktan kaçınmama

yol açıyor.     

… doktora gitmek zorunda bırakıyor.     

… kendimi üzgün/depresyonda hissettiriyor.     

… derimde kızarıklığa yol açıyor.     

2 /3

Lütfen yanıtlarken sadece son 7 günü ve elinizin durumunu göz önüne alınız!

Turkish language version, before using please contact

(38)

10

El ekzeması hastaları için

Sağlık anketi

Ellerimdeki durumdan rahatsızım

çünkü……. zaman Hiçbir Nadiren Bazen Sıklıkla zaman Her

… tedirgin hissettiriyor.     

… bazı şeylerle temastan kaçınmak

zorunda kalıyorum.     

… derim kanıyor.     

… tedavisine ait yan etkiler konusunda

endişeleniyorum.     

… aile yaşantımı ve arkadaşlarımla

ilişkilerimi etkiliyor.     

… tedavi masraflarını karşılamak zorunda

kalıyorum.     

… utanmama neden oluyor.     

… derim kuruyor.     

… ailemden birilerine veya eşime

dokunurken rahatsız hissettiriyor     

Lütfen yanıtlarken sadece son 7 günü ve elinizin durumunu göz önüne alınız!

Turkish language version, before using please contact

(39)

***************************** SPSS SYNTAX TO CODE ************************** ************** Quality of Life in Hand Eczema Questionnaire **************** ***********************************QOLHEQ ********************************** *

* The variables have to be named according to their order in the questionnaire as “qol1”, “qol2” to “qol30”.

*

* The coding for all variables has to be *”0” for “never”.

*”1” for “rarely”. *”2” for “sometimes”. *”3” for “often” and *”4” for “all the time” *

* After running this script you receive four variables for the raw domain scores named “symptoms”. “emotions”. “functions” and “treatment”

* and one variable for the overall score named “qolheq” *

* To receive country specific Rasch-transformed interval-scaled values for the subscales you additionally need a variable named “country”

* with the following coding for each country *

* VALUE LABELS country * 0 ‘Germany’ * 1 ‘Sweden’ * 2 ‘Finland’ * 3 ‘Turkey’ * 4 ‘Japan’ * 5 ‘Netherlands’. *

* Rasch-transformed values enable the comparison of QOLHEQ scores between countries - those values are only available for the countries named above. *

* The variable for the Rasch-transformed subscales will have the names “symptoms_value”. “emotions_value”. “functions_value” and “treatment_value”

********************************* START************************************* ** SYMPTOMS **************************************************************** comp symp_counter=0. comp n_qol1=qol1. if sysmis(qol1) symp_counter=symp_counter+1. if sysmis(qol1) n_qol1=0. fre n_qol1. comp n_qol6=qol6. if sysmis(qol6) symp_counter=symp_counter+1. if sysmis(qol6) n_qol6=0. fre n_qol6. comp n_qol9=qol9. if sysmis(qol9) symp_counter=symp_counter+1. if sysmis(qol9) n_qol9=0. fre n_qol9. comp n_qol11=qol11.

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10

if sysmis(qol11) symp_counter=symp_counter+1. if sysmis(qol11) n_qol11=0. fre n_qol11. comp n_qol20=qol20. if sysmis(qol20) symp_counter=symp_counter+1. if sysmis(qol20) n_qol20=0. fre n_qol20. comp n_qol23=qol23. if sysmis(qol23) symp_counter=symp_counter+1. if sysmis(qol23) n_qol23=0. fre n_qol23. comp n_qol28=qol28. if sysmis(qol28) symp_counter=symp_counter+1. if sysmis(qol28) n_qol28=0. fre n_qol28.

comp symptoms=n_qol1 + n_qol6 + n_qol9 + n_qol11 + n_qol20 + n_qol23 + n_ qol28.

if symp_counter>1 symptoms=99. missing values symptoms(99). if qol6>1 symptoms=symptoms-1. if qol11>1 symptoms=symptoms-1. if qol28>1 symptoms=symptoms-1. variable labels symptoms ‘symptoms’. fre symptoms. ** EMOTIONS **************************************************************** comp emo_counter=0. comp n_qol5=qol5. if sysmis(qol5) emo_counter=emo_counter+1. if sysmis(qol5) n_qol5=0. fre n_qol5. comp n_qol8=qol8. if sysmis(qol8) emo_counter=emo_counter+1. if sysmis(qol8) n_qol8=0.

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comp n_qol19=qol19. if sysmis(qol19) emo_counter=emo_counter+1. if sysmis(qol19) n_qol19=0. fre n_qol19. comp n_qol21=qol21. if sysmis(qol21) emo_counter=emo_counter+1. if sysmis(qol21) n_qol21=0. fre n_qol21. comp n_qol27=qol27. if sysmis(qol27) emo_counter=emo_counter+1. if sysmis(qol27) n_qol27=0. fre n_qol27. comp n_qol30=qol30. if sysmis(qol30) emo_counter=emo_counter+1. if sysmis(qol30) n_qol30=0. fre n_qol30.

comp emotions=n_qol5 + n_qol8 + n_qol10 + n_qol16 + n_qol19 + n_qol21 + n_ qol27 + n_qol30.

if emo_counter>1 emotions=99. missing values emotions(99). if qol10=2 emotions=emotions-1. if qol10=3 emotions=emotions-1. if qol10=4 emotions=emotions-2. variable labels emotions ‘emotions’. fre emotions. ** FUNCTIONING ************************************************************* comp func_counter=0. comp n_qol2=qol2. if sysmis(qol2) func_counter=func_counter+1. if sysmis(qol2) n_qol2=0. fre n_qol2. comp n_qol3=qol3. if sysmis(qol3) func_counter=func_counter+1. if sysmis(qol3) n_qol3=0. fre n_qol3. comp n_qol12=qol12. if sysmis(qol12) func_counter=func_counter+1. if sysmis(qol12) n_qol12=0. fre n_qol12. comp n_qol14=qol14. if sysmis(qol14) func_counter=func_counter+1. if sysmis(qol14) n_qol14=0. fre n_qol14.

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