University of Groningen
Hand eczema
Oosterhaven, Jart
DOI:
10.33612/diss.98242014
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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
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.
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
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
(η
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 sampleCountry 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.
10
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).
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.
10
STRUCTURAL EQUATION MODEL AND SCORING OF THE QOLHEQ
Figure 3 Item characteristic curves. For the items ofthe 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
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.
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
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
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).
REFERENCES
Agner T, Jungersted JM, Coenraads PJ, Diepgen T. Comparison of four methods for assessment of severity of hand eczema. Contact Dermatitis 2013;69(2):107-11.
Apfelbacher CJ, Molin S, Weisshaar E, BauEr A, Elsner P, Mahler V, et al. Characteristics and provision of care in patients with chronic hand eczema: updated data from the CARPE registry. Acta dermato-venereologica 2014;94(2):163-7.
Bond TG, Fox CM. Applying the Rasch model: Fundamental measurement in the human sciences: Lawrence Erlbaum, 2001.
Brodersen J, Meads D, Kreiner S, Thorsen H, Doward L, McKenna S. Methodological aspects of differential item functioning in the Rasch model. Journal of Medical Economics 2007;10(3):309-24.
Brooks R. EuroQol: the current state of play. Health Policy 1996;37(1):53-72.
Chren MM, Lasek RJ, Quinn LM, Mostow EN, Zyzanski SJ. Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. J Invest Dermatol 1996;107(5):707-13.
Coenraads P-J. Hand eczema. New England Journal of Medicine 2012;367(19):1829-37.
Diepgen T, Andersen KE, Brandao F, Bruze M, Bruynzeel D, Frosch P, et al. Hand eczema classification: a cross‐ sectional, multicentre study of the aetiology and morphology of hand eczema. British Journal of Dermatology 2009;160(2):353-8.
Dulon M, Skudlik C, Nübling M, John SM, Nienhaus A. Validity and responsiveness of the Osnabrück Hand Eczema Severity Index (OHSI): a methodological study. British Journal of Dermatology 2009;160(1):137-42.
Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a simple practical measure for routine clinical use. Clin Exp Dermatol 1994;19(3):210-6.
Grob JJ. Why are quality of life instruments not recognized as reference measures in therapeutic trials of chronic skin disorders? Journal of Investigative Dermatology 2007;127(10):2299-301.
Held E, Skoet R, Johansen JD, Agner T. The hand eczema severity index (HECSI): a scoring system for clinical assessment of hand eczema. A study of inter‐and intraobserver reliability. British Journal of Dermatology 2005;152(2):302-7.
Hongbo Y, Thomas CL, Harrison MA, Salek MS, Finlay AY. Translating the Science of Quality of Life into Practice: What Do Dermatology Life Quality Index Scores Mean. Journal of Investigative Dermatology 2005;125(4):659-64. Liu Y, Li T, An J, Zeng W, Xiao S. Rasch analysis holds no brief for the use of the Dermatology Life Quality Index (DLQI) in Chinese neurodermatitis patients. Health and quality of life outcomes 2016;14(1):1.
Masters GN. A Rasch model for partial credit scoring. Psychometrika 1982;47(2):149-74.
Moberg C, Alderling M, Meding B. Hand eczema and quality of life: a population-based study. Br J Dermatol 2009;161(2):397-403.
Nijsten T. Dermatology life quality index: time to move forward. J Invest Dermatol 2012;132(1):11-3.
Nijsten T, Meads DM, de Korte J, Sampogna F, Gelfand JM, Ongenae K, et al. Cross-cultural inequivalence of dermatology-specific health-related quality of life instruments in psoriasis patients. J Invest Dermatol 2007;127(10):2315-22.
Nijsten TE, Sampogna F, Chren MM, Abeni DD. Testing and reducing skindex-29 using Rasch analysis: Skindex-17. J Invest Dermatol 2006;126(6):1244-50.
Ofenloch RF, Diepgen TL, Popielnicki A, Weisshaar E, Molin S, Bauer A, et al. Severity and functional disability of patients with occupational contact dermatitis: validation of the German version of the Occupational Contact Dermatitis Disease Severity Index. Contact Dermatitis 2015;72(2):84-9.
Ofenloch RF, Weisshaar E, Dumke AK, Molin S, Diepgen TL, Apfelbacher C. The Quality of Life in Hand Eczema Questionnaire (QOLHEQ): validation of the German version of a new disease‐specific measure of quality of life for patients with hand eczema. British Journal of Dermatology 2014;171(2):304-12.
Oosterhaven JAF, Schuttelaar M-L, Apfelbacher C, Diepgen TL, Ofenloch RF. Guideline for the translation and national validation of the Quality of life in hand eczema Questionnaire (QOLHEQ). Contact Dermatitis submitted.
10
Schermelleh-Engel K, Moosbrugger H, Müller H. Evaluating the fit of structural equation models: Tests of significance and descriptive goodness-of-fit measures. Methods of psychological research online 2003;8(2):23-74.
Scott NW, Fayers PM, Aaronson NK, Bottomley A, de Graeff A, Groenvold M, et al. The relationship between overall quality of life and its subdimensions was influenced by culture: analysis of an international database. Journal of clinical epidemiology 2008;61(8):788-95.
Shaw RG, Mitchell-Olds T. ANOVA for unbalanced data: an overview. Ecology 1993;74(6):1638-45.
Tennant A, Penta M, Tesio L, Grimby G, Thonnard JL, Slade A, et al. Assessing and adjusting for cross-cultural validity of impairment and activity limitation scales through differential item functioning within the framework of the Rasch model: the PRO-ESOR project. Medical care 2004;42(1):I.
Thyssen JP, Johansen JD, Linneberg A, Menne T. The epidemiology of hand eczema in the general population--prevalence and main findings. Contact Dermatitis 2010;62(2):75-87.
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.
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
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
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.
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
© 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
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
© 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 mijnwerk.
… 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
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 vrijetijd (bijv. sporten, hobby’s).
… omdat ik crèmes/ zalven moet gebruiken.
… omdat het mij beperkt/belemmert als ik mijwas.
… 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
© 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 bijwerkingenvan 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
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
© 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
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
© 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 1/3Japanese language version, before using please contact
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
© 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
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
© 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
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
© 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
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
© 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
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
© 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
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
***************************** 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.
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.
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.