University of Groningen Hand eczema Oosterhaven, Jart...version of the Quality Of Life in Hand...

University of Groningen

Hand eczemaOosterhaven, Jart

DOI:10.33612/diss.98242014

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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 9Validation of the Dutch Quality Of

Life in Hand Eczema Questionnaire

JAF Oosterhaven, RF Ofenloch, MLA Schuttelaar

Accepted in the British Journal of Dermatology

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BULLETED STATEMENTSWHAT’S ALREADY KNOWN ABOUT THIS TOPIC?

• The Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) measures health-related quality of life (HRQoL) impairment in hand eczema patients.

• The QOLHEQ was validated in Germany and Japan, but the validity and interpretability of the Dutch version are unknown.

WHAT DOES THIS STUDY ADD?• This study shows that the Dutch QOLHEQ is a valid instrument to measure HRQoL

impairment in Dutch hand eczema patients, with good reliability and moderate responsiveness.

• Methods of item response theory are applied to assess and refine the scoring structure.

• Severity gradings to interpret single and change scores, specifically in Dutch patients, are proposed.

WHAT ARE THE CLINICAL IMPLICATIONS OF THIS WORK?• The Dutch QOLHEQ can now be used to measure HRQoL impairment in Dutch hand

eczema patients.

ABSTRACTBackground: Measurement instruments should be validated for use in the population in which they are intended to be used.Objectives: To assess validity, reproducibility, responsiveness and interpretability of the Dutch version of the Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).Methods: Prospective validation study in adult patients with hand eczema. At three time points (T0, baseline; T1, after 1-3 days; T2, after 4-12 weeks) , data from the QOLHEQ and multiple reference instruments were collected. Scale structure was assessed using item-response theory analysis and structural equation modeling (SEM). Single-score validity and responsiveness were tested with hypotheses on correlations with reference instruments. Concerning reproducibility, intraclass correlation coefficients (ICCagreement) and standard error of agreement (SEMagreement) were checked. Regarding interpretability, bands for severity of quality of life impairment were proposed. Also, smallest detectable change (SDC) and minimally important change (MIC) were determined.Results: At T0 n=300 subjects participated in the study (54% male, mean age 45 years). Rescoring of the scale structure resulted in a fit of the Rasch model and the SEM. The ICCagreement

was 0.91 (95% confidence interval: 0.85-0.94), the SEMagreement 5.2 points. Of the a priori formulated hypotheses 80% (single score validity) and 64% (change-scores for responsiveness) was confirmed. SDC was 14.4 points, MIC 11.5 points.Conclusion: The Dutch version of the QOLHEQ has a good structural validity and reproducibility and has a high single-score validity and moderate responsiveness. An improvement of ≥15 points should be regarded a real, important change within the Dutch population.

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Validation of the Dutch QOLHEQ

INTRODUCTIONHand eczema is a disease that is associated with an impaired quality of life.1,2 Until recently this was measured using generic (non-specific) health measurement instruments (like the Euroqol (EQ)-5D questionnaire3) or skin-specific instruments (like the Dermatology Life Quality Index, DLQI4). Although the use of these instruments might give some insight into global quality of life impairment in hand eczema patients, one might wonder whether they indicate the true extent of the impairment.5,6 In order to assess this properly, the disease-specific Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) was designed by an international group. In 2014 the German version of the QOLHEQ was validated in a sample of hand eczema patients. It was found to be valid, reliable and reproducible in a German population.7 Translations into several languages were made and a cross cultural international validation study was performed to make international comparison possible.8 However, when translating a measurement instrument and applying it to a new population, such an instrument still needs to be validated for use in that new population. In this study we will report on the scale structure, single-score validity, reproducibility, change-score validity (responsiveness) and interpretability of the Dutch QOLHEQ.

PATIENTS AND METHODSThis study was performed according to a previously published guideline, which adheres to the guidelines developed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) group.9 Here, we will describe our methods briefly. The QOLHEQ is a thirty-item questionnaire with five response categories (never, rarely, sometimes, often, all the time) assessing health-related quality of life (HRQoL) impairment, overall and concerning four subscales: Symptoms; Emotions; Functioning; Treatment and Prevention. It was translated into Dutch using a six-step method, including forward and backward translations and pilot testing for content validity.10 See Supplement S1 for the final Dutch version. A longitudinal design was used to assess the studied measurement properties. Patients were asked to complete the QOLHEQ and reference instruments at three time points, while their hand eczema was also clinically evaluated (see Figure 1).

STUDY POPULATIONPatients were included if they were ≥18 years, and had hand eczema of at least one week duration, as diagnosed by a dermatologist. Patients with concomitant skin disease on other parts of the body were also eligible for inclusion. Patients with other dermatological hand disease and/or who were unable to complete questionnaires by themselves were excluded. Recruitment was performed between March 2017 and December 2018, and took place at the dermatology department of the University Medical Center Groningen (UMCG). The Medical Ethical Review Board of the UMCG confirmed that this study did not fall under the scope of the Medical Research Involving Human Subjects Act (reference: METc 2014/391).

REFERENCE INSTRUMENTSThe following reference instruments were used. The questions for the hand eczema specific assessment and the assessment of change were pilot tested for content validity prior to this study.9,10

Hand eczema specific assessment (in Dutch, here freely translated), all with the response categories ‘not at all’, ‘slightly’, ‘moderately’, ‘strongly’, and ‘very strongly’:

• Global anchor question: How did your hand eczema bother you in your overall health

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state in the past seven days?• Symptoms subscale anchor: How did the symptoms of your hand eczema (like pain,

itch, fissuring, redness) bother you in the past seven days?• Emotions subscale anchor: How strong did your hand eczema affect your emotional

well-being (e.g. making you angry, frustrated, or anxious about the future) in the past seven days?

• Functioning subscale anchor: How strong did your hand eczema affect your functioning (e.g. performing your (home)work or doing hobbies) in the past seven days?

• Treatment and Prevention subscale anchor: How did treatment and prevention of your hand eczema bother you in the past seven days?

Skin specific HRQoL instruments:• Dermatology life quality index (DLQI): comprising 10 items scored on a 4-point scale,

with six dimensions (symptoms and feelings; daily activities; leisure; work and school; personal relationships; treatment) .4

• Skindex-29: comprising 29 (or technically 30) items scored on a 5-point scale, with three dimensions (symptoms, emotions and functioning).11

Generic HRQoL instrument:• Euroqol-5D-5L (EQ-5D-5L): comprising 5 items scored on a 5-point scale, and a visual

analogue scale (VAS) ranging from 0-100.12

Figure 1 Overview of the longitudinal study design. DLQI, Dermatology Life Quality Index; EQ-5D, quality of life questionnaire of the EuroQOL Group; HECSI, Hand Eczema Severity Index; HRQoL, Health-Related Quality of Life; QOLHEQ, Quality Of Life in Hand Eczema Questionnaire.

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Severity (morphological signs and extent):• The Photographic guide for severity of hand eczema (‘Photoguide’): an instrument

to measure the clinical severity of hand eczema (by study personnel or patient) on a 5-point scale: clear, almost clear, moderate, severe, very severe.13

• The Hand Eczema Severity Index (HECSI): a continuous scale ranging from 0-360, assessed by study personnel.14

Assessment of change:• A Global Rating of Change (GRC) scale was used to assess which patients were

unchanged compared to baseline at T1 and which patients had changed (worsened or improved) at T2. Patients responded to the question ‘Overall, has there been any change in how your hand eczema bothers you since the last time you completed the QOLHEQ?’ using the following seven categories: much improvement, moderate improvement, minor improvement, no change, minor deterioration, moderate deterioration, much deterioration.

• Subscale change questions: similar questions were asked to assess changes in the subscales at T2, but phrased as ‘has there been any change in how [insert subscale] bothers you since the last time you completed the QOLHEQ?’ (much improvement, moderate improvement, minor improvement, no change, minor deterioration, moderate deterioration, much deterioration).

STATISTICAL ANALYSISsample size

We used an item/subject ratio of 1:10. The QOLHEQ has 30 items, which results in a sample size of 300 subjects.9

scale structure

We used techniques of modern test theory to check the scale structure (structural validity) of the Dutch QOLHEQ. An item response theory (IRT) analysis was performed testing whether the subscales of the Dutch QOLHEQ fit the assumed unidimensional Rasch model, using RUMM2030 (RummLab Pty Ltd, Duncraig, WA, Australia). Since we received a significant likelihood ratio test (p < 0.001) in all four subscales of the QOLHEQ, we applied a model with an unrestricted parameterization where the thresholds can differ across items: the partial credit model (a two-parameter logistic model for polytomous response categories. Fit to the Rasch model was determined using the χ2-statistic over the item-trait interaction for each item and subscale. Also, means and standard deviations (SD) of fit residuals for the item-person interaction were checked. Individual item fit was also tested with a χ2-test. To check for differential item functioning (DIF) an analysis of variance (ANOVA) was done according to sex and age group (median split of the study population). DIF was assumed to be clinically relevant if a mean difference of 0.5 logits was found for an item.

Furthermore, it was tested if the QOLHEQ fitted a predefined structural equation model (SEM) with confirmatory factor analysis (CFA), using Amos Version 23.0 (Chicago: IBM SPSS). This predefined model was built to assess a second order construct, health-related quality of life, measured by four latent factors (subdomains): Symptoms; Emotions; Functioning; Treatment and Prevention.7 These subdomains are measured using the 30 items of the QOLHEQ. Because of a multivariate kurtosis of the data (Mardia’s coefficient = 172.8), various fit indices were calculated using the unweighted least squares method, which is robust against violations of

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the assumptions of a multivariate normal distribution.15

Measures of internal consistency of each subscale were reported using Cronbach’s α and the Person Separation Index (PSI), given by RUMM2030. For both, values between 0.70 – 0 .95 were considered as evidence for good internal consistency.

single-score validity and responsiveness (change-score validity)Tests on the correlation between the Dutch QOLHEQ and the reference instruments were performed on single scores (at T0) and change scores (at T2) using Pearson’s correlation coefficient (r). Strong correlation (+++) was defined as r > 0.7, moderate correlation (++) as 0.7> r >0.4, and weak correlation (+) as 0.4> r >0.2. For the change scores, correlation differences by a minimum of 0.10 were seen as relevant. Furthermore, as recommended by COSMIN, it was tested whether correlations of changes in QOLHEQ score with changes in instruments measuring similar constructs were ≥ 0.50, and additionally whether correlations of changes in QOLHEQ score with changes in instruments measuring related, but dissimilar constructs were lower, i.e., 0.30–0.50.16 Validity was considered to be high if <25% of hypotheses were rejected, moderate if 25–50% were rejected, and poor if >50% were rejected.

reproducibility

Measurement error was reported with the standard error of measurement (SEMagreement) between subjects at T0 and unchanged subjects at T1. Reliability (test-retest) was reported in the same patients with the intraclass correlation coefficient, using a two-way mixed effects model for absolute agreement (ICCagreement).

17 An ICCagreement value of >0.70 was considered acceptable.18

interpretability

For single scores, cutoff values for bands indicating how hand eczema affects HRQoL were calculated using the weighted kappa (κ) coefficient of agreement between QOLHEQ scores and the global anchor and subscale anchors. In order not to underestimate the burden for patients when using the banding, we investigated the bands within a distance of 0.01 of the highest κ-values. The final band chosen was the band for which the amount of patients reporting a higher impairment according to the anchor question compared with the band was lowest. For change scores, the smallest detectable change (SDC) was calculated using the formula SCD = 1.96 * √2 * SEMagreement.

17 The minimally important change (MIC) for improvement was determined using three different anchor-based methods (see Supplement S2 regarding change score interpretability). For deterioration no MIC was determined, because too few patients deteriorated to draw sound conclusions.

missing values

In eight cases, the QOLHEQ was missing one item. For these, the value 0 was imputed.7 At T1, four cases had skipped a whole page, containing ten QOLHEQ items. These four cases were excluded from the analyses for reproducibility. One case was missing one DLQI item. Here, the value 0 was imputed.4 In four cases, the SKINDEX was missing one item and in one case it was missing two items. These cases were divided by 28 and 27 respectively for the calculation of the total score. Analyses were performed with IBM SPSS Statistics for Windows, Version 23.0 (IBM, Armonk, NY, USA).

RESULTSThree hundred patients were included in the study at baseline (T0). See Figure 2 for a study

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Table 1 Baseline (T0) characteristics.

Males (n = 160) Females (n = 134) Total (n = 294)Age (years) Mean (SD) 45.0 (14.5) 44.8 (17.5) 44.9 (15.9) Range 18–74 18–83 18–83Photoguide severity (patient) Mean (SD) 2.8 (0.9) 2.7 (0.8) 2.7 (0.8) Range 1–5 1–5 1–5Photoguide severity (physician) Mean (SD) 3.2 (0.9) 3.1 (0.9) 3.2 (0.9) Range 2–5 2–5 2–5DLQI Mean (SD) 7.5 (6.1)a 9.3 (6.7)a 8.4 (6.4) Range 0–27 0–26 0–27Skindex-29 Mean (SD) 33.8 (20.7) 38.0 (22.0) 35.7 (21.4) Range 0–91 0–96 0–96EQ-5D-5L Mean value score (SD) 0.77 (0.21) 0.74 (0.25) 0.76 (0.23) Range -0.16 to 1.00 -0.24 to 1.00 -0.24 to 1.00 Mean VAS-score (SD) 72.9 (17.1) 73.2 (19.1) 73.1 (18.1) Range 10–100 9–100 9–100HECSI Mean (SD) 48.6 (41.1) 40.9 (35.5) 45.1 (38.8) Range 3–192 2–144 2–192QOLHEQ Total mean (SD) 29.0 (15.2)a 36.3 (16.8)a 32.3 (16.3) Range 3–75 0–82 0–82 Symptoms mean (SD) 8.8 (4.1)a 10.5 (4.4)a 9.6 (4.3) Range 0–19 0–21 0–21 Emotions mean (SD) 6.8 (4.6)a 8.5 (5.2)a 7.6 (5.0) Range 0–21 0–24 0–24 Functioning mean (SD) 6.8 (4.6)a 8.9 (5.4)a 7.7 (5.1) Range 0–20 0–22 0–22 Treatment and Prevention mean (SD) 6.7 (3.7)a 8.3 (3.8)a 7.4 (3.9) Range 0–17 0–17 0–17aDifferences between males and females are significant (P < 0.05) according to a Student’s t-test. DLQI, Dermatology Life Quality Index; EQ-5D, quality of life questionnaire of the EuroQOL Group; HECSI, Hand Eczema Severity Index; QOLHEQ, Quality Of Life in Hand Eczema Questionnaire; SD, standard deviation.

flow chart. Of the n=294 patients included in the T0 analyses, 54.4% was male. The mean age was 44.9 years. While the rating of hand eczema severity did not differ between sexes, females indicated significantly more impairment in HRQoL than males on the total QOLHEQ and all subscales, as well as on the DLQI. Detailed characteristics of the study population and mean T0 values of the reference instruments are reported in Table 1.

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Figure 2 Study flow diagram. aThis case had almost clear hand eczema (assessed by both study personnel and patient) but had answered all items of the QOLHEQ with ‘always’. bN=4 patients were excluded for T1 analyses, because they had skipped a whole page of the QOLHEQ, thus bringing the total to N=166. QOLHEQ, Quality Of Life in Hand Eczema Questionnaire.

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SCALE STRUCTUREWhen running the Rasch analysis we found disordered thresholds for 10 items, across all subscales. These items were mostly affected by the categories ‘rarely’ and ‘sometimes’, indicating that the Dutch population may have problems differentiating between those categories in general. Therefore we joined those categories for all items, resulting in a scoring structure of 0-1-1-2-3 for the whole QOLHEQ. This structure fitted the Rasch model for all subscales. However, we still found relevant disordered thresholds for item 26 ‘Costs’. To fix this, we rescored this item to 0-1-1-1-2. See Table 2 for detailed item characteristics. Rasch analysis of the subscales then revealed:

• Symptoms: overall χ2 = 28.7; degrees of freedom (d.f.) = 28; P > 0.43. A PSI of 0.85 and a Cronbach’s α of 0.86 indicated a good internal consistency.

• Emotions: overall χ2 = 42.7; d.f. = 32; P > 0.09. A PSI of 0.86 and a Cronbach’s α of 0.89 indicated a good internal consistency.

• Functioning: overall χ2 = 39.8; d.f. = 32; P > 0.16. A PSI of 0.86 and a Cronbach’s α of 0.89 indicated a good internal consistency.

• Treatment and Prevention: overall χ2 = 33.8; d.f. = 28; P > 0.20. A PSI of 0.78 and a Cronbach’s α of 0.78 indicated a good internal consistency.

DIF analysis showed significant uniform DIF for only one item in the Functioning subscale. Item 3 (‘Home duties’) showed that females have a slightly higher chance (+0.6 logits) to be impaired for this item. This seems plausible, as females are still more often involved in performing home duties then males, and corresponds to what was found in the German validation study of the QOLHEQ.7

The CFA showed that the Dutch QOLHEQ had a good fit to the proposed SEM (see Table 3). Total maximum scores that can be obtained with the Dutch QOLHEQ within the Dutch population are now: total score 89; Symptoms 21; Emotions 24; Functioning 24; Treatment and Prevention 20. An SPSS syntax can be found in Supplement S3 to recode the QOLHEQ to Dutch scores.

SINGLE-SCORE VALIDITY AND RESPONSIVENESS (CHANGE-SCORE VALIDITY)Of the a priori formulated hypotheses for single score validity 80% was confirmed, indicating high validity of the Dutch QOLHEQ (Table 4). In the analysis of responsiveness n=124 cases were included because these subjects indicated that they had changed at T2 according to the GRC scale, while being unchanged at T1 or when compared to baseline if they were non-respondents at T1. These therefore represented really changed patients. In these patients 64% of the a priori formulated hypotheses for change scores were confirmed, indicating a moderate responsiveness of the Dutch QOLHEQ (Table 5).

REPRODUCIBILITYThere were n=166 cases included in the analysis for reproducibility. This concerns the unchanged patients at T1 according to the GRC scale. The SEMagreement of the complete QOLHEQ was 5.2 points. The ICCagreement was 0.91 (95% confidence interval [CI]: 0.85-0.94), indicating good reproducibility. For the subscales we found the following values, indicating good reproducibility of all four subscales:

• Symptoms: SEMagreement = 1.6 points; ICCagreement = 0.88 (95% CI: 0.84-0.91).• Emotions: SEMagreement = 1.8 points; ICCagreement = 0.88 (95% CI: 0.82-0.92).• Functioning: SEMagreement = 1.9 points; ICCagreement = 0.88 (95% CI: 0.80-0.92).• Treatment and Prevention: SEMagreement = 1.5 points; ICCagreement = 0.86 (95% CI: 0.80-0.89).

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Table 2 Results of Rasch analysis.

Item no. in questionnaire Description Locationa Rangeb

Fit residual χ2 P-valuec

Scoring structure

Symptoms23 Bleeding 1.40 –1.51 to 3.58 –0.69 2.76 0.60 0–1–1–2–3 9 Causing loss of sleep 1.15 –0.55 to 2.35 1.07 4.79 0.31 0–1–1–2–311 Fissuring –0.09 –2.25 to 1.77 0.25 2.98 0.56 0–1–1–2–31 Painful –0.30 –3.01 to 1.75 –0.69 7.05 0.13 0–1–1–2–320 Redness –0.40 –2.98 to 1.39 1.41 1.46 0.83 0–1–1–2–36 Itching –0.58 –3.27 to 1.90 0.73 2.30 0.68 0–1–1–2–328 Dryness –1.19 –3.71 to 1.16 –0.32 7.31 0.12 0–1–1–2–3Emotions30 Nervous 1.01 –1.07 to 2.47 –2.45 9.25 0.06 0–1–1–2–319 Sad/depressed 0.84 –1.51 to 2.53 –2.37 9.34 0.05 0–1–1–2–327 Embarrassed 0.81 –1.09 to 2.25 –0.39 1.48 0.83 0–1–1–2–310 Anxious about future 0.36 –1.23 to 1.28 1.55 4.25 0.37 0–1–1–2–321 Irritated 0.13 –2.66 to 2.18 0.25 1.78 0.78 0–1–1–2–316 Hide my hands –0.04 –1.62 to 0.86 3.02 8.51 0.07 0–1–1–2–35 Frustrated –1.28 –4.22 to 0.89 –0.68 1.18 0.88 0–1–1–2–38 Annoyed –1.84 –4.90 to 0.15 1.30 6.99 0.14 0–1–1–2–3Functioning17 Avoiding contact with people 1.33 –0.29 to 2.53 1.06 6.00 0.20 0–1–1–2–325 Affecting friendships 1.06 –0.64 to 2.09 0.90 0.48 0.98 0–1–1–2–329 Touching partner 0.81 –1.15 to 2.62 0.91 0.73 0.95 0–1–1–2–315 Dressing myself 0.48 –1.79 to 2.05 –2.27 11.12 0.03 0–1–1–2–312 Leisure time/hobbies –0.51 –3.12 to 1.27 –0.98 9.70 0.05 0–1–1–2–314 Washing myself –0.83 –2.82 to 0.70 –0.84 2.24 0.69 0–1–1–2–32 Restricting job –0.94 –3.57 to 1.02 –0.26 6.54 0.16 0–1–1–2–33 Home duties –1.40 –4.19 to 0.48 –0.41 2.95 0.57 0–1–1–2–3Treatment and Prevention26 Costs 0.97 –0.20 to 2.13 1,82 10.48 0.03 0–1–1–1–2d

24 Side-effects 0.60 –0.89 to 1.35 –0,60 7.45 0.11 0–1–1–2–318 Visiting physician 0.57 –1.25 to 1.52 –0,28 2.44 0.66 0–1–1–2–37 Time consuming 0.05 –2.17 to 1.50 –0,63 4.14 0.39 0–1–1–2–34 Wearing gloves –0.33 –1.52 to 0.57 0,33 3.56 0.47 0–1–1–2–322 Avoiding certain things –0.67 –2.62 to 0.64 –0,07 1.71 0.79 0–1–1–2–313 Using creams –1.19 –3.33 to 0.28 0,35 2.87 0.58 0–1–1–2–3aLocation sorted by severity; items assessing most severe impairment are on top of each domain/subscale. bRange of thresholds of each item. cAccording to a χ2-test; misfit is considered significant if P < 0.007 or P < 0.008 (dependent on number of items in the subscale). dScoring structure adjusted additionally.

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Table 2 Results of Rasch analysis.

Item no. in questionnaire Description Locationa Rangeb

Fit residual χ2 P-valuec

Scoring structure

Symptoms23 Bleeding 1.40 –1.51 to 3.58 –0.69 2.76 0.60 0–1–1–2–3 9 Causing loss of sleep 1.15 –0.55 to 2.35 1.07 4.79 0.31 0–1–1–2–311 Fissuring –0.09 –2.25 to 1.77 0.25 2.98 0.56 0–1–1–2–31 Painful –0.30 –3.01 to 1.75 –0.69 7.05 0.13 0–1–1–2–320 Redness –0.40 –2.98 to 1.39 1.41 1.46 0.83 0–1–1–2–36 Itching –0.58 –3.27 to 1.90 0.73 2.30 0.68 0–1–1–2–328 Dryness –1.19 –3.71 to 1.16 –0.32 7.31 0.12 0–1–1–2–3Emotions30 Nervous 1.01 –1.07 to 2.47 –2.45 9.25 0.06 0–1–1–2–319 Sad/depressed 0.84 –1.51 to 2.53 –2.37 9.34 0.05 0–1–1–2–327 Embarrassed 0.81 –1.09 to 2.25 –0.39 1.48 0.83 0–1–1–2–310 Anxious about future 0.36 –1.23 to 1.28 1.55 4.25 0.37 0–1–1–2–321 Irritated 0.13 –2.66 to 2.18 0.25 1.78 0.78 0–1–1–2–316 Hide my hands –0.04 –1.62 to 0.86 3.02 8.51 0.07 0–1–1–2–35 Frustrated –1.28 –4.22 to 0.89 –0.68 1.18 0.88 0–1–1–2–38 Annoyed –1.84 –4.90 to 0.15 1.30 6.99 0.14 0–1–1–2–3Functioning17 Avoiding contact with people 1.33 –0.29 to 2.53 1.06 6.00 0.20 0–1–1–2–325 Affecting friendships 1.06 –0.64 to 2.09 0.90 0.48 0.98 0–1–1–2–329 Touching partner 0.81 –1.15 to 2.62 0.91 0.73 0.95 0–1–1–2–315 Dressing myself 0.48 –1.79 to 2.05 –2.27 11.12 0.03 0–1–1–2–312 Leisure time/hobbies –0.51 –3.12 to 1.27 –0.98 9.70 0.05 0–1–1–2–314 Washing myself –0.83 –2.82 to 0.70 –0.84 2.24 0.69 0–1–1–2–32 Restricting job –0.94 –3.57 to 1.02 –0.26 6.54 0.16 0–1–1–2–33 Home duties –1.40 –4.19 to 0.48 –0.41 2.95 0.57 0–1–1–2–3Treatment and Prevention26 Costs 0.97 –0.20 to 2.13 1,82 10.48 0.03 0–1–1–1–2d

24 Side-effects 0.60 –0.89 to 1.35 –0,60 7.45 0.11 0–1–1–2–318 Visiting physician 0.57 –1.25 to 1.52 –0,28 2.44 0.66 0–1–1–2–37 Time consuming 0.05 –2.17 to 1.50 –0,63 4.14 0.39 0–1–1–2–34 Wearing gloves –0.33 –1.52 to 0.57 0,33 3.56 0.47 0–1–1–2–322 Avoiding certain things –0.67 –2.62 to 0.64 –0,07 1.71 0.79 0–1–1–2–313 Using creams –1.19 –3.33 to 0.28 0,35 2.87 0.58 0–1–1–2–3aLocation sorted by severity; items assessing most severe impairment are on top of each domain/subscale. bRange of thresholds of each item. cAccording to a χ2-test; misfit is considered significant if P < 0.007 or P < 0.008 (dependent on number of items in the subscale). dScoring structure adjusted additionally.

Table 3 Fit indices for the structural equation model of the QOLHEQ, consisting of four subscales (factors) loading on a higher order factor measuring HRQoL.

Fit indexComplete 2nd order model Model fit

Recommendation for good fita

Recommendation for acceptable fita

SRMR 0.067 Acceptable < 0.05 0.05 < SRMR ≤ 0.10GFI 0.980 Good > 0.95 0.90 ≤ GFI < 0.95AGFI 0.976 Good > 0.90 0.85 ≤ AGFI < 0.90NFI 0.976 Good > 0.95 0.90 ≤ NFI < 0.95RFI 0.974 Good > 0.95 0.90 ≤ RFI < 0.95aAccording to guidelines by Schermelleh-Engel et al.15 HRQoL, Health-Related Quality of Life; SRMR, Standardized Root Mean Residual; GFI, Goodness of Fit Index; AGFI, Adjusted Goodness of Fit Index; NFI, Normed Fit Index; QOLHEQ, Quality Of Life in Hand Eczema Questionnaire; RFI, Relative Fit Index.

Table 4 Single-score validity (at T0), correlations between the QOLHEQ and reference instruments.

Reference measureCorrelation hypothesizeda

Correlation found R2

Hypotheses confirmed?

DLQI +++ 0.77 0.59 YesSkindex-29 +++ 0.80 0.64 YesGlobal anchor ++ 0.59 0.35 YesEQ-5D-5L (VAS)b ++ –0.33 0.11 NoEQ-5D-5L (Value)b ++ –0.57 0.32 YesPhotoguide (patient) ++ 0.47 0.22 YesPhotoguide (physician) + 0.43 0.18 NoHECSI + 0.37 0.14 YesSubscalesc Symptoms anchor +++ 0.70 0.49 YesEmotions anchor +++ 0.71 0.50 YesFunctioning anchor +++ 0.72 0.52 YesTreatment and Prevention anchor +++ 0.58 0.34 NoSkindex-29 Symptoms subscale +++ 0.77 0.59 YesSkindex-29 Emotions subscale +++ 0.85 0.73 YesSkindex-29 Functioning subscale +++ 0.70 0.49 YesSpecific comparisonsQOLHEQ Symptoms subscale – Photoguide (physician) ++ 0.52 0.27 YesQOLHEQ Symptoms subscale - HECSI ++ 0.46 0.21 YesaA priori defined: Strong correlation (+++) r > 0.7; moderate correlation (++) 0.7 > r > 0.4; weak correlation (+) 0.4 > r > 0.2. bNegative value, because the EQ-5D-5L is scored inversely to the QOLHEQ. cCorrelation between QOLHEQ subscale score and reference instrument. DLQI, Dermatology Life Quality Index; EQ-5D, quality of life questionnaire of the EuroQOL Group; HECSI, Hand Eczema Severity Index; QOLHEQ, Quality Of Life in Hand Eczema Questionnaire; VAS, Visual Analogue Scale.

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INTERPRETABILITYFor single scores, several bands for severity of HRQoL impairment were tested for the overall QOLHEQ score and subscales. For the overall QOLHEQ, we propose separate bands for males and females. The final band chosen for the overall QOLHEQ had a κ-value of 0.430: not at all, 0-13; slightly, 14-28; moderately, 29-44; strongly, 45-64; very strongly, ≥65. See Supplement S4 for all proposed bands and for details on the calculation of single score interpretability.

The SCD in N=166 unchanged patients at T1 was 14.4 points for the overall QOLHEQ. The preferred MIC, obtained with the Receiver Operating Characteristic method, was 11.5. See Supplement S2 for SDC and MIC of the subscales and further details on calculations.

Table 5 Responsiveness (change-score validity) in changed patients between T0 and T2.

Hypothesis on correlationsCorrelations found


Change QOLHEQ – GRC > Change DLQI – GRC 0.46 vs 0.38 NoChange QOLHEQ – GRC > Change Skindex-29 – GRC 0.46 vs 0.33 YesChange QOLHEQ – GRC > Change EQ-5D Value – GRC 0.46 vs –0.27a YesChange QOLHEQ – GRC > Change EQ-5D VAS – GRC 0.46 vs –0.25a YesChange QOLHEQ – change Photoguide (physician) > Change DLQI – change Photoguide (physician)

0.46 vs 0.45 No

Change QOLHEQ – change Photoguide (physician) > Change Skindex-29 – change Photoguide (physician)

0.46 vs 0.46 No

Change QOLHEQ – change Photoguide (physician) > Change EQ-5D Value – change Photoguide (physician)

0.46 vs –0.36a Yes

Change QOLHEQ – change Photoguide (physician) > Change EQ-5D VAS – change Photoguide (physician)

0.46 vs –0.23a Yes

Change QOLHEQ – change HECSI > Change DLQI – change HECSI 0.40 vs 0.35 NoChange QOLHEQ – change HECSI > Change Skindex-29 – change HECSI 0.40 vs 0.33 NoChange QOLHEQ – change HECSI > Change EQ-5D Value – change HECSI 0.40 vs –0.27a YesChange QOLHEQ – change HECSI > Change EQ-5D VAS – change HECSI 0.40 vs –0.15a YesHypothesis on subscale correlationsChange QOLHEQ Symptoms – Symptoms change question > Change Skindex-29 Symptoms – Symptoms change question

0.49 vs 0.44 No

Change QOLHEQ Emotions – Emotions change question > Change Skindex-29 Emotions – Emotions change question

0.47 vs 0.30 Yes

Change QOLHEQ Functioning – Functioning change question > Change Skindex-29 Functioning – Functioning change question

0.54 vs 0.37 Yes

Hypothesis according to COSMINInstruments measuring similar constructsChange QOLHEQ – GRC 0.46 NoChange QOLHEQ – Change DLQI 0.56 YesChange QOLHEQ – Change Skindex-29 0.63 YesInstruments measuring related, but dissimilar constructsChange QOLHEQ – Change Photoguide (physician) 0.46 YesChange QOLHEQ – Change HECSI 0.40 YesChange QOLHEQ – Change EQ-5D Value –0.48 a YesChange QOLHEQ – Change EQ-5D VAS –0.26 a NoaNegative value, because the EQ-5D-5L is scored inversely to the QOLHEQ. COSMIN, COnsensus-based Standards for the selection of health Measurement INstruments; DLQI, Dermatology Life Quality Index; EQ-5D, quality of life questionnaire of the EuroQOL Group; GRC, Global Rating of Change scale; HECSI, Hand Eczema Severity Index; QOLHEQ, Quality Of Life in Hand Eczema Questionnaire; VAS, Visual Analogue Scale.

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DISCUSSIONIn this study, we tested various measurement properties of the Dutch QOLHEQ. We proposed a scoring structure fitting a Rasch model, and demonstrated good validity and reproducibility, and moderate responsiveness. An improvement of ≥15 points within the Dutch population should be regarded as a real, important improvement.

Compared to the German version, the Dutch QOLHEQ had to be substantially rescored. A possible explanation for this is that the Dutch translation for the item ‘sometimes’ (Dutch: ‘nu en dan ‘) was not optimal; possibly in Dutch it was too similar to the category ‘rarely’ (Dutch: ‘zelden’). A future validation study could assess if another translation (for example changing ‘nu en dan’ to ‘soms’) may yield a better discrimination on the lower end of the Dutch QOLHEQ-scale. Still the Dutch translation of the QOLHEQ as presented here, fulfills the rigorous requirements of modern test theory including IRT and SEM. Therefore, it is ready to be used in any study assessing HRQoL impairments in a Dutch population of patients with hand eczema. However, when reporting QOLHEQ results of Dutch patients in future studies, both the national and international values, which were obtained for six languages in a cross-cultural validation study8, should be reported for the sake of international comparison.

The item ‘Costs’ provided the largest issues in the analysis. Subjects could not be distinguished, based on this item. The health insurance companies in the Netherlands reimburse the treatment of hand eczema, including several emollients and protective gloves made of textile. As a result, the out-of-pocket costs for hand eczema are often low. This may offer a good explanation as to why a large group of patients (n=161) chose ‘never’ for this item. We chose to keep the item in the instrument, as it may still be important for a small subgroup of patients. However, if in the future efforts would be made to reduce the amount of items in the QOLHEQ, for example to increase its ease of use, this item should be the first to be considered for removal.

Most of our a priori stated hypotheses were confirmed in the analyses for single-score validity. For the single scores, the Photoguide, as scored by physician, correlated moderately with the QOLHEQ (0.43), where we had expected it to be only weakly correlated (<0.4). However, the Photoguide, as scored by the patient, still correlated stronger with the QOLHEQ than the physician score, which was as we had hypothesized. Therefore, we do not consider this an issue. For the change scores, the QOLHEQ showed a higher or comparable responsiveness when compared to the reference instruments, indicating that the QOLHEQ was sensitive to detect change in HRQoL in hand eczema patients.

This validation study was performed using a paper QOLHEQ version. Over the last decades, digital questionnaires are increasingly used for capturing Patient Reported Outcomes (PROs), mainly because they provide direct integration into medical health records and research databases. If a paper questionnaire is adapted to an electronic version, this may alter the measurement properties of the questionnaire.19 However, this is not always the case.20,21 For the QOLHEQ, consideration should be given to this in future studies.

A limitation of this study was that the identification of unchanged patients at T1 and changed patients at T2 was based on the memory of patients. Especially for T2, which was assessed 4 to 12 weeks following T0, a certain amount of recall bias cannot be ruled out. Another limitation was that already between T0 and T1 many patients (N=73) indicated a change in the impairment they perceived because of their hand eczema, limiting the sample size for reproducibility and responsiveness, although the numbers are still acceptable.22 This clearly reflects the variable course that is often associated with the disease. A final limitation could have been the short time between T0 and T1, in which subjects might have been able to

Table 5 Responsiveness (change-score validity) in changed patients between T0 and T2.

Hypothesis on correlationsCorrelations found


Change QOLHEQ – GRC > Change DLQI – GRC 0.46 vs 0.38 NoChange QOLHEQ – GRC > Change Skindex-29 – GRC 0.46 vs 0.33 YesChange QOLHEQ – GRC > Change EQ-5D Value – GRC 0.46 vs –0.27a YesChange QOLHEQ – GRC > Change EQ-5D VAS – GRC 0.46 vs –0.25a YesChange QOLHEQ – change Photoguide (physician) > Change DLQI – change Photoguide (physician)

0.46 vs 0.45 No

Change QOLHEQ – change Photoguide (physician) > Change Skindex-29 – change Photoguide (physician)

0.46 vs 0.46 No

Change QOLHEQ – change Photoguide (physician) > Change EQ-5D Value – change Photoguide (physician)

0.46 vs –0.36a Yes

Change QOLHEQ – change Photoguide (physician) > Change EQ-5D VAS – change Photoguide (physician)

0.46 vs –0.23a Yes

Change QOLHEQ – change HECSI > Change DLQI – change HECSI 0.40 vs 0.35 NoChange QOLHEQ – change HECSI > Change Skindex-29 – change HECSI 0.40 vs 0.33 NoChange QOLHEQ – change HECSI > Change EQ-5D Value – change HECSI 0.40 vs –0.27a YesChange QOLHEQ – change HECSI > Change EQ-5D VAS – change HECSI 0.40 vs –0.15a YesHypothesis on subscale correlationsChange QOLHEQ Symptoms – Symptoms change question > Change Skindex-29 Symptoms – Symptoms change question

0.49 vs 0.44 No

Change QOLHEQ Emotions – Emotions change question > Change Skindex-29 Emotions – Emotions change question

0.47 vs 0.30 Yes

Change QOLHEQ Functioning – Functioning change question > Change Skindex-29 Functioning – Functioning change question

0.54 vs 0.37 Yes

Hypothesis according to COSMINInstruments measuring similar constructsChange QOLHEQ – GRC 0.46 NoChange QOLHEQ – Change DLQI 0.56 YesChange QOLHEQ – Change Skindex-29 0.63 YesInstruments measuring related, but dissimilar constructsChange QOLHEQ – Change Photoguide (physician) 0.46 YesChange QOLHEQ – Change HECSI 0.40 YesChange QOLHEQ – Change EQ-5D Value –0.48 a YesChange QOLHEQ – Change EQ-5D VAS –0.26 a NoaNegative value, because the EQ-5D-5L is scored inversely to the QOLHEQ. COSMIN, COnsensus-based Standards for the selection of health Measurement INstruments; DLQI, Dermatology Life Quality Index; EQ-5D, quality of life questionnaire of the EuroQOL Group; GRC, Global Rating of Change scale; HECSI, Hand Eczema Severity Index; QOLHEQ, Quality Of Life in Hand Eczema Questionnaire; VAS, Visual Analogue Scale.

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recall their answers from T0. However, as was apparent from the number of quickly changed patients at T1, this short period was needed to ensure a sufficient number of eligible subjects at T1. Also, we believe that answers given on the 30-item long QOLHEQ will be hard to recall, even after 1-3 days.

In conclusion, the Dutch version of the QOLHEQ has shown to be a valid, reproducible and responsive instrument in the Dutch hand eczema population. We recommend its use to measure impairment of HRQoL in Dutch hand eczema patients.

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REFERENCES1. Moberg C, Alderling M, Meding B. Hand eczema and quality of life: a population-based study. Br J Dermatol. 2009;161(2):397-403.2. Agner T, Andersen KE, Brandao FM, et al. Hand eczema severity and quality of life: a cross-sectional, multicentre study of hand eczema patients. Contact Dermatitis. 2008;59(1):43-47.3. Brooks R. EuroQol: the current state of play. Health Policy. 1996;37(1):53-72.4. Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210-216.5. Coenraads PJ, Bouma J, Diepgen TL. Quality of life of patients with occupationally-induced hand eczema. Hautarzt. 2004;55(1):28-30.6. Ahmed A, Shah R, Papadopoulos L, Bewley A. An ethnographic study into the psychological impact and adaptive mechanisms of living with hand eczema. Clin Exp Dermatol. 2015;40(5):495-501.7. 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. Br J Dermatol. 2014;171(2):304-312.8. Ofenloch RF, Oosterhaven JAF, Susitaival P, et al. Cross-Cultural Validation of the Quality of Life in Hand Eczema Questionnaire (QOLHEQ). J Invest Dermatol. 2017;137(7):1454-1460.9. Oosterhaven JAF, Schuttelaar MLA, Apfelbacher C, Diepgen TL, Ofenloch RF. Guideline for translation and national validation of the Quality Of Life in Hand Eczema Questionnaire (QOLHEQ). Contact Dermatitis. 2017;77(2):106-115.10. Wild D, Grove A, Martin M, et al. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health. 2005;8(2):94-104.11. Chren MM, Lasek RJ, Flocke SA, Zyzanski SJ. Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Arch Dermatol. 1997;133(11):1433-1440.12. Herdman M, Gudex C, Lloyd A, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727-1736.13. Coenraads PJ, Van Der Walle H, Thestrup-Pedersen K, et al. Construction and validation of a photographic guide for assessing severity of chronic hand dermatitis. Br J Dermatol. 2005;152(2):296-301.14. 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. Br J Dermatol. 2005;152(2):302-307.15. Schermelleh-Engel K, Moosbrugger H, Müller H. Evaluating the fit of structural equation models: Tests of significance and descriptive goodness-of-fit measures. Methods Psychol Res online. 2003;8(2):23-74.16. Prinsen CAC, Mokkink LB, Bouter LM, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27(5):1147-1157.17. de Vet HC, Terwee CB, Knol DL, Bouter LM. When to use agreement versus reliability measures. J Clin Epidemiol. 2006;59(10):1033-1039.18. Terwee CB, Bot SD, de Boer MR, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34-42.19. Juniper EF, Langlands JM, Juniper BA. Patients may respond differently to paper and electronic versions of the same questionnaires. Respir Med. 2009;103(6):932-934.20. Bjorner JB, Rose M, Gandek B, Stone AA, Junghaenel DU, Ware JE. Method of administration of PROMIS scales did not significantly impact score level, reliability, or validity. J Clin Epidemiol. 2014;67(1):108-113.21. Robles N, Rajmil L, Rodriguez-Arjona D, et al. Development of the web-based Spanish and Catalan versions of the Euroqol 5D-Y (EQ-5D-Y) and comparison of results with the paper version. Health Qual Life Outcomes. 2015;13(1):72.22. de Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in Medicine. 1st ed. New York: Cambridge University Press; 2011.

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SUPPLEMENT S1 - DUTCH QUALITY OF LIFE IN HAND ECZEMA QUESTIONNAIRE

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SUPPLEMENT S2 – INTERPRETABILITY OF CHANGE SCORES ON THE DUTCH QUALITY OF LIFE IN HAND ECZEMA QUESTIONNAIRE (QOLHEQ)

SMALLEST DETECTABLE CHANGE (SDC)The SDC of the Dutch QOLHEQ was calculated based on the analysis of N=166 unchanged patients on the Global anchor question of change between T0 and T1. This gave the following results:

• QOLHEQ overall: SEMagreement = 5.2 points; SDC = 14.4 points.• Symptoms subscale: SEMagreement = 1.6 points; SDC = 4.5 points.• Emotions subscale: SEMagreement = 1.8 points; SDC = 4.9 points.• Functioning subscale: SEMagreement = 1.9 points; SDC = 5.2 points.• Treatment and Prevention subscale: SEMagreement = 1.5 points; SDC = 4.2 points.

MINIMALLY IMPORTANT CHANGE (MIC)The correlation between the change in QOLHEQ score and the change in the global anchor question for change in HRQoL impairment was r = 0.51. The correlations for the subscales were:

• Symptoms: r = 0.51.• Emotions: r = 0.40.• Functioning: r = 0.53.• Treatment and Prevention: r = 0.29.

Therefore, the anchor questions were considered to be acceptable anchors for determination of the MIC, except for the anchor question for the Treatment and Prevention subscale.1,2 We did determine the MIC for this scale, but the lack of good correlation between the change anchor and the change score must be seriously considered when using the values for the Treatment and Prevention subscale. The correlations were not influenced by sex or age, except for the correlation between sex and the emotion subscale where there was a significant difference between males and females (P < 0.01). For the sake of clarity and simplicity, we decided not to calculate separate MICs for males and females for only this subscale.

Change scores were calculated for the QOLHEQ and anchor questions by subtracting the score at T0 from the score at T2. Thus, negative scores correspond to deterioration and positive scores to improvement in HRQoL. Patients were stratified according to their degree of change, taking into account the indication of their change as important/not important (see above). Three MIC values were determined for the QOLHEQ overall and subscale scores (see below for detailed results):

• The MIC based on the mean change in QOLHEQ value that corresponds with a one-step important change on the anchor questions for change.

• The MIC of the receiver operating characteristic (ROC) cutoff point, indicating the point closest to the upper-left corner, where the sum of percentages of correctly classified patients is highest.

• The MIC based on the 95% upper limit cutoff point of the unchanged (or ‘not importantly changed’) patients, which corresponds to meanchange + 1.645 * SDchange of this group (or strictly to the meandifference and SDdifference since this concerns theoretically unchanged patients).

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Calculation of the MIC of improvement according to our three used methods resulted in the values shown in Table S2.1. To obtain one final value for the MIC, the MIC obtained with the ROC method was chosen as the preferred MIC, because it is aimed at minimizing misclassification of patients who are importantly improved and patients who are unchanged .3 This resulted in a value of 11.5 points for the overall QOLHEQ.

Table S2.1 Minimally important change (MIC) indicated as points improvement on the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ); defined using three methods.

MIC method QOLHEQ overall Symptoms Emotions Functioning Treatment and

Preventiona

Mean cutoff 9.0 2.5 2.1 3.0 0.6ROC curve 11.5 3.5 4.5 2.5 2.595% limit 15.7 6.4 6.6 6.2 5.0MIC values are presented for the overall QOLHEQ and its subscales. ROC, receiver operating characteristic. aAnchor question of change correlated < 0.30 with the Treatment and Prevention subscale change score.

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overall dutch qolheq

Table S2.2 The mean change scores on the overall Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ), according to changes measured with the Global anchor question for change.

Global anchor of changeQOLHEQ overall score in importantly changed patients

Perceived changeChange indicated as important N/Ntotal (%) Mean change SDchange

Much improvement 53/54 (98) +16.1 14.2Moderate improvement 24/26 (92) +9.8 10.7Minor improvement (MIC) 14/19 (72) +9.0 13.1No changea 42 (n/a) +1.9 8.7Minor deterioration 6/8 (75) +4.3 5.8Moderate deterioration 10/13 (77) -5.0 8.0Much deterioration 4/4 (100) -1.5 7.0MIC, minimally important change; n/a, not applicable; SD, standard deviation. aThis group includes N=35 patients that indicated ‘No change’, with additionally the patients from the ‘Minor improvement’ and ‘Minor deterioration’ group who indicated that they had not importantly changed.

Figure S2.1 Receiver Operating Characteristic (ROC) curve for various cut-off points for change on the overall Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) score.

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symptoms subscale - dutch

Table S2.3 The mean change scores on the Symptoms subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ), according to changes measured with the Symptoms anchor question for change.

Symptoms anchor of changeSymptoms score in importantly changed patients


Much improvement 47/47 (100) +5.5 4.0Moderate improvement 23/24 (96) +4.0 4.2Minor improvement (MIC) 22/28 (78) +2.5 3.0No changea 47 (n/a) +0.8 3.4Minor deterioration 5/7 (71) +0.2 1.3Moderate deterioration 10/13 (77) -2.5 2.5Much deterioration 7/7 (100) +1.4 3.7MIC, minimally important change; n/a, not applicable; SD, standard deviation. aThis group includes N=39 patients that indicated ‘No change’, with additionally the patients from the ‘Minor improvement’ and ‘Minor deterioration’ group who indicated that they had not importantly changed.

Figure S2.2 Receiver Operating Characteristic (ROC) curve for various cut-off points for change on the Symptoms subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).

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emotions subscale - dutch

Table S2.4 The mean change scores on the Emotions subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ), according to changes measured with the Emotions anchor question for change.

Emotions anchor of changeEmotions score in importantly changed patients


Much improvement 35/35 (100) +4.6 4.5Moderate improvement 18/18 (100) +3.8 4.4Minor improvement (MIC) 16/17 (94) +2.1 3.4No changea 96 (n/a) +1.3 3.2Minor deterioration 8/9 (89) -1.3 3.2Moderate deterioration 9/10 (90) +0.3 2.9Much deterioration 6/6 (100) -2.3 6.3MIC, minimally important change; n/a, not applicable; SD, standard deviation. aThis group includes N=94 patients that indicated ‘No change’, with additionally the patients from the ‘Minor improvement’ and ‘Minor deterioration’ group who indicated that they had not importantly changed.

Figure S2.3 Receiver Operating Characteristic (ROC) curve for various cut-off points for change on the Emotions subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).

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functioning subscale - dutch

Table S2.5 The mean change scores on the Functioning subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ), according to changes measured with the Functioning anchor question for change.

Functioning anchor of changeFunctioning score in importantly changed patients


Much improvement 30/30 (100) +6.5 4.7Moderate improvement 14/14 (100) +3.4 3.9Minor improvement (MIC) 19/20 (95) +3.0 3.8No changea 101 (n/a) +1.1 3.1Minor deterioration 4/6 (67) 0.0 2.2Moderate deterioration 13/14 (93) -2.2 3.1Much deterioration 4/4 (100) -5.3 8.5MIC, minimally important change; n/a, not applicable; SD, standard deviation. aThis group includes N=98 patients that indicated ‘No change’, with additionally the patients from the ‘Minor improvement’ and ‘Minor deterioration’ group who indicated that they had not importantly changed.

Figure S2.4 Receiver Operating Characteristic (ROC) curve for various cut-off points for change on the Functioning subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).

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treatment and prevention subscale - dutch

Table S2.6 The mean change scores on the Treatment and Prevention subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ), according to changes measured with the Treatment and Prevention anchor question for change.

Treatment and Prevention anchor of changeTreatment and Prevention score in importantly changed patients


Much improvement 37/38 (97) +1.9 2.7Moderate improvement 24/24 (100) +2.3 2.8Minor improvement (MIC) 20/23 (87) +0.6 3.5No changea 88 (n/a) +0.7 2.6Minor deterioration 8/8 (100) -1.8 3.7Moderate deterioration 5/7 (71) -2.6 0.9Much deterioration 4/4 (100) -1.0 3.4MIC, minimally important change; n/a, not applicable; SD, standard deviation. aThis group includes N=85 patients that indicated ‘No change’, with additionally the patients from the ‘Minor improvement’ and ‘Minor deterioration’ group who indicated that they had not importantly changed.

Figure S2.5 Receiver Operating Characteristic (ROC) curve for various cut-off points for change on the Treatment and Prevention subscale of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).

REFERENCES1. Cella D, Hahn EA, Dineen K. Meaningful change in cancer-specific quality of life scores: differences between improvement and worsening. Qual Life Res. 2002;11(3):207-221.2. Revicki D, Hays RD, Cella D, Sloan J. Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. J Clin Epidemiol. 2008;61(2):102-109.3. Terwee CB, Roorda LD, Dekker J, et al. Mind the MIC: large variation among populations and methods. J Clin Epidemiol. 2010;63(5):524-534.

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SUPPLEMENT S3 – SPSS SYNTAX TO RECODE THE DUTCH QUALITY OF LIFE IN HAND ECZEMA QUESTIONNAIRE (QOLHEQ)

The QOLHEQ may be used in daily clinical care for monitoring purpose without seeking permission. The use in academic studies which are not externally

funded is also free. For any other use please send a request to [email protected]

***************************** SPSS SYNTAX TO CODE *************************************** Dutch Quality of Life in Hand Eczema Questionnaire *******************************************Dutch 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 “nooit”. *”1” for “zelden”. *”2” for “nu en dan”. *”3” for “vaak” and *”4” for “altijd”** 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”

********************************* START*************************************** SYMPTOMS ****************************************************************

comp symp_counter=0.

comp n_qol1=qol1.if sysmis(qol1) symp_counter=symp_counter+1.if sysmis(qol1) n_qol1=0.recode n_qol1 (2=1) (3=2) (4=3).fre n_qol1.




comp n_qol20=qol20.

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if sysmis(qol20) symp_counter=symp_counter+1.if sysmis(qol20) n_qol20=0.recode n_qol20 (2=1) (3=2) (4=3).fre n_qol20.



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).

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.recode n_qol5 (2=1) (3=2) (4=3).fre n_qol5.




comp n_qol19=qol19.if sysmis(qol19) emo_counter=emo_counter+1.if sysmis(qol19) n_qol19=0.

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recode n_qol19 (2=1) (3=2) (4=3).fre n_qol19.




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).

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.recode n_qol2 (2=1) (3=2) (4=3).fre n_qol2.




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comp functions=n_qol2 + n_qol3 + n_qol12 + n_qol14 + n_qol15 + n_qol17 + n_qol25 + n_qol29.if func_counter>1 functions=99.missing values functions(99).

variable labels functions ‘functions’.fre functions.

**TREATMENT and PREVENTION***************************************************

comp treat_counter=0.

comp n_qol4=qol4.if sysmis(qol4) treat_counter=treat_counter+1.if sysmis(qol4) n_qol4=0.recode n_qol4 (2=1) (3=2) (4=3).fre n_qol4.



comp n_qol18=qol18.

186

if sysmis(qol18) treat_counter=treat_counter+1.if sysmis(qol18) n_qol18=0.recode n_qol18 (2=1) (3=2) (4=3).fre n_qol18.




comp treatment=n_qol4 + n_qol7 + n_qol13 + n_qol18 + n_qol22 + n_qol24 + n_qol26.if treat_counter>1 treatment=99.missing values treatment(99).

variable labels treatment ‘treatment and prevention’.fre treatment.

**QOLHEQ OVERALL*************************************************************

comp counter=symp_counter + emo_counter + func_counter + treat_counter.fre counter.

comp QOLHEQ=n_qol1 + n_qol6 + n_qol9 + n_qol11 + n_qol20 + n_qol23 + n_qol28 + n_qol5 + n_qol8 + n_qol10 + n_qol16 + n_qol19 + n_qol21 + n_qol27 + n_qol30 + n_qol2 + n_qol3 + n_qol12 + n_qol14 + n_qol15 + n_qol17 + n_qol25 + n_qol29 + n_qol4 + n_qol7 + n_qol13 + n_qol18 + n_qol22 + n_qol24 + n_qol26.if counter>3 QOLHEQ=99.missing values QOLHEQ(99).variable labels qolheq ‘QOLHEQ overall score’.fre QOLHEQ.

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SUPPLEMENT S4 – INTERPRETABILITY OF SINGLE SCORES OF THE DUTCH QUALITY OF LIFE IN HAND ECZEMA QUESTIONNAIRE

Table S4.1 Basic characteristics of study population.

Males (n = 160) Females (n = 134) Total (n = 294)Age (years) Mean (SD) 45.0 (14.5) 44.8 (17.5) 44.9 (15.9) Range 18–74 18–83 18–83QOLHEQ overall Mean (SD) 29.0 (15.2)a 36.3 (16.8)a 32.3 (16.3) Range 3 – 75 0 – 82 0 – 82Symptoms subscale Mean (SD) 8.8 (4.1)a 10.5 (4.4)a 9.6 (4.3) Range 0 – 19 0 – 21 0 – 21 Emotions subscale Mean (SD) 6.8 (4.6)a 8.5 (5.2)a 7.6 (5.0) Range 0 – 21 0 – 24 0 – 24Functioning subscale Mean (SD) 6.8 (4.6)a 8.9 (5.4)a 7.7 (5.1) Range 0 – 20 0 – 22 0 – 22Treatment and Prevention subscale Mean (SD) 6.7 (3.7)a 8.3 (3.8)a 7.4 (3.9) Range 0 – 17 0 – 17 0 – 17HRQoL impaired – Global Not at all, N (%) 32 (20.0) 30 (22.4) 62 (21.1) Slightly, N (%) 56 (35.0) 31 (23.1) 87 (29.6) Moderately, N (%) 42 (26.3) 42 (31.3) 84 (28.6) Strongly, N (%) 24 (15.0) 25 (18.7) 49 (16.7) Very strongly, N (%) 6 (3.8) 6 (4.5) 12 (4.1)HRQoL impaired – Symptomsa

Not at all, N (%) 3 (1.9) 6 (4.5) 9 (3.1) Slightly, N (%) 55 (34.4) 22 (16.4) 77 (26.2) Moderately, N (%) 40 (25.0) 39 (29.1) 79 (26.9) Strongly, N (%) 43 (26.9) 53 (39.6) 96 (32.7) Very strongly, N (%) 19 (11.9) 14 (10.4) 33 (11.2)HRQoL impaired – Emotions Not at all, N (%) 68 (42.5) 45 (33.6) 113 (38.4) Slightly, N (%) 39 (24.4) 33 (24.6) 72 (24.5) Moderately, N (%) 29 (18.1) 28 (20.9) 57 (19.4) Strongly, N (%) 18 (11.3) 23 (17.2) 41 (13.9) Very strongly, N (%) 6 (3.8) 5 (3.7) 11 (3.7)HRQoL impaired – Functioning Not at all, N (%) 38 (23.8) 24 (17.9) 62 (21.1) Slightly, N (%) 44 (27.5) 31 (23.1) 75 (25.5) Moderately, N (%) 41 (25.6) 29 (21.6) 70 (23.8) Strongly, N (%) 24 (15.0) 34 (25.4) 58 (19.7) Very strongly, N (%) 13 (8.1) 16 (11.9) 29 (9.9)aSignificant difference between males and females (P < 0.01). QOLHEQ, Quality Of Life in Hand Eczema Questionnaire.

188

Table S4.3 Number of patients with each total Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) value score encountered in this study and corresponding mean, median and mode of the Global anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ score (baseline)

Number of cases

Global anchor question (baseline)(indicating global HRQoL impairment)

Mean Median ModeNot at all Slightly Moderately StronglyVery

strongly0 2 1 1 1.00 1 0/21 1 1 0.00 0 03 1 1 1.00 1 14 1 1 2.00 2 25 2 2 0.00 0 06 4 3 1 0.25 0 07 3 1 1 1 1.00 1 0/1/28 3 2 1 0.33 0 09 5 5 0.00 0 010 4 3 1 0.25 0 011 3 3 1.00 1 112 5 1 2 2 1.20 1 1/213 8 5 2 1 0.50 0 014 10 3 5 2 0.90 1 115 4 2 2 1.00 1 0/216 2 1 1 0.50 0.5 0/117 4 1 1 2 1.25 1.5 218 5 5 1.00 1 119 5 1 2 1 1 1.40 1 120 3 1 2 0.67 1 121 3 1 2 1.67 2 222 8 3 5 0.63 1 123 3 1 1 1 1.00 1 0/1/224 12 4 8 1.67 2 225 3 1 1 1 1.33 1 0/1/326 3 2 1 1.00 0 027 7 2 5 0.71 1 128 7 1 4 2 1.14 1 129 4 2 2 1.50 1.5 1/230 9 3 1 3 2 1.44 2 0/231 5 2 2 1 1.80 2 1/232 4 1 1 2 1.25 1.5 233 12 4 6 2 1.83 2 234 12 2 5 5 1.25 1 1/235 12 2 3 4 2 1 1.75 2 236 3 1 1 1 1.00 1 0/1/2HRQoL, health-related quality of life.

Males (n = 160) Females (n = 134) Total (n = 294)

HRQoL impaired – Treatment and Prevention Not at all, N (%) 56 (35.0) 42 (31.3) 98 (33.3) Slightly, N (%) 52 (32.5) 37 (27.6) 89 (30.3) Moderately, N (%) 33 (20.6) 35 (26.1) 68 (23.1) Strongly, N (%) 13 (8.1) 17 (12.7) 30 (10.2) Very strongly, N (%) 6 (3.8) 3 (2.2) 9 (3.1)aSignificant difference between males and females (P < 0.01). QOLHEQ, Quality Of Life in Hand Eczema Questionnaire.

SINGLE SCORE BANDS (SEE NEXT PAGES FOR DETAILS)

Table S4.2 Final bands for health-related quality of life impairment expressed as single-scores on the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).

HRQoL impaired Coefficient of agreement (κ) with the anchor questions

Correlation (r) with the anchor questionNot at all Slightly Moderately Strongly

Very strongly

QOLHEQ overall 0 – 13 14 – 28 29 – 44 45 – 64 ≥65 0.430 0.57

QOLHEQ overall (M) 0 – 10 11 – 33 34 – 46 47 – 65 ≥66 0.452 0.61QOLHEQ overall (F) 0 – 23 24 – 31 32 – 47 48 – 64 ≥65 0.425 0.52Symptoms subscale 0 1 – 7 8 – 10 11 – 15 ≥16 0.536 0.70Emotions subscale 0 – 5 6 – 10 11 – 15 16 – 17 ≥18 0.512 0.70Functioning subscale 0 – 1 2 – 7 8 – 10 11 – 16 ≥17 0.528 0.73Treatment and Prevention subscale

0 – 6 7 – 9 10 – 13 14 – 15 ≥16 0.402 0.57

HRQoL, health-related quality of life; M, males; F, females.

Table S4.1 Continued

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OVERALL DUTCH QOLHEQ SCORES overall dutch qolheq – mean, median and mode of the global anchor per score

Correlation with single score anchor: 0.57

Table S4.3 Number of patients with each total Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) value score encountered in this study and corresponding mean, median and mode of the Global anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).


Number of cases



strongly0 2 1 1 1.00 1 0/21 1 1 0.00 0 03 1 1 1.00 1 14 1 1 2.00 2 25 2 2 0.00 0 06 4 3 1 0.25 0 07 3 1 1 1 1.00 1 0/1/28 3 2 1 0.33 0 09 5 5 0.00 0 010 4 3 1 0.25 0 011 3 3 1.00 1 112 5 1 2 2 1.20 1 1/213 8 5 2 1 0.50 0 014 10 3 5 2 0.90 1 115 4 2 2 1.00 1 0/216 2 1 1 0.50 0.5 0/117 4 1 1 2 1.25 1.5 218 5 5 1.00 1 119 5 1 2 1 1 1.40 1 120 3 1 2 0.67 1 121 3 1 2 1.67 2 222 8 3 5 0.63 1 123 3 1 1 1 1.00 1 0/1/224 12 4 8 1.67 2 225 3 1 1 1 1.33 1 0/1/326 3 2 1 1.00 0 027 7 2 5 0.71 1 128 7 1 4 2 1.14 1 129 4 2 2 1.50 1.5 1/230 9 3 1 3 2 1.44 2 0/231 5 2 2 1 1.80 2 1/232 4 1 1 2 1.25 1.5 233 12 4 6 2 1.83 2 234 12 2 5 5 1.25 1 1/235 12 2 3 4 2 1 1.75 2 236 3 1 1 1 1.00 1 0/1/2HRQoL, health-related quality of life.

Table S4.2 Final bands for health-related quality of life impairment expressed as single-scores on the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ).

HRQoL impaired Coefficient of agreement (κ) with the anchor questions

Correlation (r) with the anchor questionNot at all Slightly Moderately Strongly

Very strongly

QOLHEQ overall 0 – 13 14 – 28 29 – 44 45 – 64 ≥65 0.430 0.57

QOLHEQ overall (M) 0 – 10 11 – 33 34 – 46 47 – 65 ≥66 0.452 0.61QOLHEQ overall (F) 0 – 23 24 – 31 32 – 47 48 – 64 ≥65 0.425 0.52Symptoms subscale 0 1 – 7 8 – 10 11 – 15 ≥16 0.536 0.70Emotions subscale 0 – 5 6 – 10 11 – 15 16 – 17 ≥18 0.512 0.70Functioning subscale 0 – 1 2 – 7 8 – 10 11 – 16 ≥17 0.528 0.73Treatment and Prevention subscale

0 – 6 7 – 9 10 – 13 14 – 15 ≥16 0.402 0.57

HRQoL, health-related quality of life; M, males; F, females.

190


Number of cases



strongly37 7 1 4 1 1 1.29 1 138 8 1 2 3 2 1.75 2 239 9 1 3 2 3 1.78 2 1/340 7 2 2 2 1 1.29 1 0/1/241 4 3 1 2.25 2 242 8 1 1 2 4 2.13 2.5 343 6 1 1 4 1.50 2 244 5 1 2 2 2.20 2 2/345 2 1 1 3.00 3 2/446 5 2 3 1.60 2 247 4 1 2 1 1.75 2 248 7 1 1 4 1 2.71 3 349 3 1 2 3.33 4 450 1 1 1.00 1 152 2 2 2.00 2 253 1 1 3.00 3 354 2 1 1 2.00 2 1/355 4 1 3 2.75 3 356 2 2 3.00 3 357 2 1 1 2.50 2.5 2/358 2 2 3.00 3 359 1 1 3.00 3 360 1 1 3.00 3 361 2 1 1 2.50 2.5 2/362 1 1 2.00 2 264 1 1 3.00 3 365 4 1 3 3.75 4 466 3 2 1 1.33 0 070 2 2 3.00 3 371 2 1 1 3.50 3.5 3/473 2 1 1 3.50 3.5 3/475 1 1 4.00 4 482 1 1 3.00 3 3Total 294 62 87 84 49 12HRQoL, health-related quality of life.


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overall qolheq dutch – tested severity bands

Table S4.4 Kappa coefficients of agreement for different proposed sets of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands.

Band no.

Possible QOLHEQ total score bandings(indicating global HRQoL impairment)

Coefficient of agreement (κ) with Global anchor questionNot at all Slightly Moderately Strongly Very strongly

1 0-10 11-28 29-44 45-64 ≥65 0.4262 0-13 14-28 29-44 45-64 ≥65 0.4303 0-10 11-32 33-44 45-64 ≥65 0.4204 0-13 14-32 33-44 45-64 ≥65 0.4245 0-10 11-37 38-44 45-64 ≥65 0.4196 0-13 14-37 38-44 45-64 ≥65 0.4237 0-10 11-28 29-47 48-64 ≥65 0.4368 0-13 14-28 29-47 48-64 ≥65 0.4409 0-10 11-32 33-47 48-64 ≥65 0.43010 0-13 14-32 33-47 48-64 ≥65 0.43311 0-10 11-37 38-47 48-64 ≥65 0.42912 0-13 14-37 38-47 48-64 ≥65 0.43213 0-10 11-28 29-52 53-64 ≥65 0.42014 0-13 14-28 29-52 53-64 ≥65 0.42415 0-10 11-32 33-52 53-64 ≥65 0.41316 0-13 14-32 33-52 53-64 ≥65 0.41817 0-10 11-37 38-52 53-64 ≥65 0.35018 0-13 14-37 38-52 53-64 ≥65 0.41719 0-10 11-28 29-44 45-70 ≥71 0.41520 0-13 14-28 29-44 45-70 ≥71 0.41921 0-10 11-32 33-44 45-70 ≥71 0.40922 0-13 14-32 33-44 45-70 ≥71 0.41323 0-10 11-37 38-44 45-70 ≥71 0.40824 0-13 14-37 38-44 45-70 ≥71 0.41225 0-10 11-28 29-47 48-70 ≥71 0.42526 0-13 14-28 29-47 48-70 ≥71 0.42927 0-10 11-32 33-47 48-70 ≥71 0.41828 0-13 14-32 33-47 48-70 ≥71 0.42229 0-10 11-37 38-47 48-70 ≥71 0.41730 0-13 14-37 38-47 48-70 ≥71 0.42131 0-10 11-28 29-52 53-70 ≥71 0.40832 0-13 14-28 29-52 53-70 ≥71 0.41333 0-10 11-32 33-52 53-70 ≥71 0.40234 0-13 14-32 33-52 53-70 ≥71 0.40635 0-10 11-37 38-52 53-70 ≥71 0.40036 0-13 14-37 38-52 53-70 ≥71 0.40537 0-10 11-28 29-44 45-73 ≥74 0.40938 0-13 14-28 29-44 45-73 ≥74 0.41339 0-10 11-32 33-44 45-73 ≥74 0.40240 0-13 14-32 33-44 45-73 ≥74 0.40741 0-10 11-37 38-44 45-73 ≥74 0.401The final chosen band is highlighted in yellow. HRQoL, health-related quality of life.


Number of cases



strongly37 7 1 4 1 1 1.29 1 138 8 1 2 3 2 1.75 2 239 9 1 3 2 3 1.78 2 1/340 7 2 2 2 1 1.29 1 0/1/241 4 3 1 2.25 2 242 8 1 1 2 4 2.13 2.5 343 6 1 1 4 1.50 2 244 5 1 2 2 2.20 2 2/345 2 1 1 3.00 3 2/446 5 2 3 1.60 2 247 4 1 2 1 1.75 2 248 7 1 1 4 1 2.71 3 349 3 1 2 3.33 4 450 1 1 1.00 1 152 2 2 2.00 2 253 1 1 3.00 3 354 2 1 1 2.00 2 1/355 4 1 3 2.75 3 356 2 2 3.00 3 357 2 1 1 2.50 2.5 2/358 2 2 3.00 3 359 1 1 3.00 3 360 1 1 3.00 3 361 2 1 1 2.50 2.5 2/362 1 1 2.00 2 264 1 1 3.00 3 365 4 1 3 3.75 4 466 3 2 1 1.33 0 070 2 2 3.00 3 371 2 1 1 3.50 3.5 3/473 2 1 1 3.50 3.5 3/475 1 1 4.00 4 482 1 1 3.00 3 3Total 294 62 87 84 49 12HRQoL, health-related quality of life.

192

Band no.

Possible QOLHEQ total score bandings(indicating global HRQoL impairment)


42 0-13 14-37 38-44 45-73 ≥74 0.40643 0-10 11-28 29-47 48-73 ≥74 0.41844 0-13 14-28 29-47 48-73 ≥74 0.42345 0-10 11-32 33-47 48-73 ≥74 0.41246 0-13 14-32 33-47 48-73 ≥74 0.41647 0-10 11-37 38-47 48-73 ≥74 0.41148 0-13 14-37 38-47 48-73 ≥74 0.41549 0-10 11-28 29-52 53-73 ≥74 0.40150 0-13 14-28 29-52 53-73 ≥74 0.40651 0-10 11-32 33-52 53-73 ≥74 0.39552 0-13 14-32 33-52 53-73 ≥74 0.40053 0-10 11-37 38-52 53-73 ≥74 0.39354 0-13 14-37 38-52 53-73 ≥74 0.398The final chosen band is highlighted in yellow. HRQoL, health-related quality of life.

overview of dutch qolheq overall scores falling outside the proposed banding

N=34 patients (11.6%) had a Global anchor score > 1 point outside of that predicted by the final overall QOLHEQ band. There were 72 (24.5%) patients with an actual Global anchor score 1 point lower than the final QOLHEQ band predicted. In this group there were significantly more females (P < 0.05). There were 57 patients (19.4%) with an actual Global anchor score 1 point higher than the final overall QOLHEQ band predicted. In this group there were significantly more males (P < 0.05). Because of this, we decided to propose separate bandings for males and females for the overall QOLHEQ (see Table S3.2 for the bandings and Tables S3.5 – S3.8 for details). There were no age distribution differences between the patients falling within the proposed banding and those falling outside it.


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OVERALL DUTCH QOLHEQ SCORES – MALESoverall dutch qolheq (males) – mean, median and mode of the global anchor per score


Table S4.5 Number of male patients with each total Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) score encountered in this study and corresponding mean, median and mode of the Global anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).


Number of cases



strongly3 1 1 1.00 1 14 1 1 2.00 2 25 2 2 0.00 0 06 4 3 1 0.25 0 07 3 1 1 1 1.00 1 0/1/28 2 1 1 0.50 0.5 0/19 3 3 0.00 0 010 3 2 1 0.33 0 011 1 1 1.00 1 112 3 1 2 0.67 1 113 5 3 1 1 0.60 0 014 8 2 4 2 1.00 1 115 4 2 2 1.00 1 0/216 2 1 1 0.50 0.5 0/117 1 1 2.00 2 218 3 3 1.00 1 119 2 1 1 1.50 1.5 1/220 3 1 2 0.67 1 121 3 1 2 1.67 2 222 5 1 4 0.80 1 123 2 1 1 1.50 1.5 1/224 8 3 5 1.63 2 225 2 1 1 0.50 0.5 0/126 1 1 0.00 0 027 3 1 2 0.67 1 128 5 4 1 1.20 1 129 2 1 1 1.50 1.5 1/230 6 2 2 2 1.67 2 0/2/331 2 1 1 2.00 2 1/332 3 1 1 1 1.00 1 0/1/233 5 3 2 1.40 1 134 6 2 4 1.67 2 235 5 2 2 1 2.40 3 1/336 2 1 1 1.00 1 0/237 3 2 1 1.33 1 138 3 1 1 1 2.00 2 1/2/339 5 2 1 2 2.00 2 1/3HRQoL, health-related quality of life.

194

Table S4.7 Number of female patients with each total Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) score encountered in this study and corresponding mean, median and mode of the Global anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).


Number of cases



strongly0 2 1 1 1.00 1 0/21 1 1 0.00 0 08 1 1 0.00 0 09 2 2 0.00 0 010 1 1 0.00 0 011 2 2 1.00 1 112 2 2 2.00 2 213 3 2 1 0.33 0 014 2 1 1 0.50 0.5 0/117 3 1 1 1 1.00 1 0/1/218 2 2 1.00 1 119 3 1 1 1 1.33 1 0/1/322 3 2 1 0.33 0 023 1 1 0.00 0 024 4 1 3 1.75 2 225 1 1 3.00 3 326 2 1 1 1.50 1.5 0/327 4 1 3 0.75 1 128 2 1 1 1.00 1 0/229 2 1 1 1.50 1.5 1/230 3 1 1 1 1.00 1 0/1/231 3 1 2 1.67 2 232 1 1 2.00 2 233 7 1 4 2 2.14 2 234 6 2 3 1 0.83 1 135 7 2 1 4 1.29 2 236 1 1 1.00 1 1HRQoL, health-related quality of life.

overall qolheq dutch (males) – tested severity bands

Table S4.6 Kappa coefficients of agreement for different proposed sets of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands for males.

Band no.

Possible QOLHEQ total score bandings (indicating global HRQoL impairment)


1 0-6 7-33 34-46 47-65 ≥66 0.4122 0-10 11-33 34-46 47-65 ≥66 0.4523 0-6 7-37 38-46 47-65 ≥66 0.3944 0-10 11-37 38-46 47-65 ≥66 0.4355 0-6 7-40 41-46 47-65 ≥66 0.3856 0-10 11-40 41-46 47-65 ≥66 0.4267 0-6 7-33 34-52 53-65 ≥66 0.3948 0-10 11-33 34-52 53-65 ≥66 0.4369 0-6 7-37 38-52 53-65 ≥66 0.37510 0-10 11-37 38-52 53-65 ≥66 0.41811 0-6 7-40 41-52 53-65 ≥66 0.36512 0-10 11-40 41-52 53-65 ≥66 0.409

The final chosen band is highlighted in yellow. HRQoL, health-related quality of life.


Number of cases



strongly40 1 1 0.00 0 041 1 1 3.00 3 342 7 1 2 4 2.29 3 343 3 1 2 1.67 2 244 3 1 1 1 2.00 2 1/2/345 2 1 1 3.00 3 2/446 3 1 2 1.67 2 247 1 1 3.00 3 348 3 1 2 2.33 3 349 1 1 4.00 4 450 1 1 1.00 1 152 2 2 2.00 2 255 1 1 3.00 3 356 1 1 3.00 3 357 1 1 3.00 3 358 2 2 3.00 3 361 1 1 3.00 3 365 1 1 3.00 3 366 1 1 4.00 4 473 1 1 4.00 4 475 1 1 4.00 4 4Total 160 32 56 42 24 6HRQoL, health-related quality of life.


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overview of dutch qolheq overall scores for males falling outside the proposed banding

N=12 patients (7.5%) had a Global anchor score > 1 point outside of that predicted by the final overall QOLHEQ band. There were 31 (19.3%) patients with an actual Global anchor score 1 point lower than the final QOLHEQ band predicted. There were 39 patients (24.3%) with an actual Global anchor score 1 point higher than the final overall QOLHEQ band predicted. There were no age distribution differences between the patients falling within the proposed banding and those falling outside it.

OVERALL DUTCH QOLHEQ SCORES – FEMALESoverall dutch qolheq (females) – mean, median and mode of the global anchor per score


Table S4.7 Number of female patients with each total Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) score encountered in this study and corresponding mean, median and mode of the Global anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).


Number of cases



strongly0 2 1 1 1.00 1 0/21 1 1 0.00 0 08 1 1 0.00 0 09 2 2 0.00 0 010 1 1 0.00 0 011 2 2 1.00 1 112 2 2 2.00 2 213 3 2 1 0.33 0 014 2 1 1 0.50 0.5 0/117 3 1 1 1 1.00 1 0/1/218 2 2 1.00 1 119 3 1 1 1 1.33 1 0/1/322 3 2 1 0.33 0 023 1 1 0.00 0 024 4 1 3 1.75 2 225 1 1 3.00 3 326 2 1 1 1.50 1.5 0/327 4 1 3 0.75 1 128 2 1 1 1.00 1 0/229 2 1 1 1.50 1.5 1/230 3 1 1 1 1.00 1 0/1/231 3 1 2 1.67 2 232 1 1 2.00 2 233 7 1 4 2 2.14 2 234 6 2 3 1 0.83 1 135 7 2 1 4 1.29 2 236 1 1 1.00 1 1HRQoL, health-related quality of life.

196


Number of cases



strongly37 4 1 2 1 1.25 1 138 5 1 1 2 1 1.60 2 239 4 1 1 1 1 1.50 1.5 0/1/2/340 6 1 2 2 1 1.50 1.5 1/241 3 3 2.00 2 242 1 1 1.00 1 143 3 1 2 1.33 2 244 2 1 1 2.50 2.5 2/346 2 1 1 1.50 1.5 1/247 3 1 2 1.33 2 248 4 1 2 1 3.00 3 349 2 1 1 3.00 3 2/453 1 1 3.00 3 354 2 1 1 2.00 2 1/355 3 1 2 2.67 3 356 1 1 3.00 3 357 1 1 2.00 2 259 1 1 3.00 3 360 1 1 3.00 3 361 1 1 2.00 2 262 1 1 2.00 2 264 1 1 3.00 3 365 3 3 4.00 4 466 2 2 0.00 0 070 2 2 3.00 3 371 2 1 1 3.50 3.5 3/473 1 1 3.00 3 382 1 1 3.00 3 3Total 134 30 31 42 25 6HRQoL, health-related quality of life.


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overall qolheq dutch (females) – tested severity bands

Table S4.8 Kappa coefficients of agreement for different proposed sets of the Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands for females.

Band no.

Possible QOLHEQ total score bandings (indicating global HRQoL impairment)


1 0-10 11-31 32-47 48-64 ≥65 0.4152 0-14 15-31 32-47 48-64 ≥65 0.4143 0-23 24-31 32-47 48-64 ≥65 0.4254 0-10 11-37 38-47 48-64 ≥65 0.4235 0-14 15-37 38-47 48-64 ≥65 0.4226 0-23 24-37 38-47 48-64 ≥65 0.4337 0-10 11-43 44-47 48-64 ≥65 0.4068 0-14 15-43 44-47 48-64 ≥65 0.4069 0-23 24-43 44-47 48-64 ≥65 0.41710 0-10 11-31 32-47 48-70 ≥71 0.39711 0-14 15-31 32-47 48-70 ≥71 0.39712 0-23 24-31 32-47 48-70 ≥71 0.40913 0-10 11-37 38-47 48-70 ≥71 0.40614 0-14 15-37 38-47 48-70 ≥71 0.40615 0-23 24-37 38-47 48-70 ≥71 0.41716 0-10 11-43 44-47 48-70 ≥71 0.38917 0-14 15-43 44-47 48-70 ≥71 0.38918 0-23 24-43 44-47 48-70 ≥71 0.401The final chosen band is highlighted in yellow. HRQoL, health-related quality of life.

overview of dutch qolheq overall scores for females falling outside the proposed banding

N=20 patients (14.9%) had a Global anchor score > 1 point outside of that predicted by the final overall QOLHEQ band. There were 29 (21.6%) patients with an actual Global anchor score 1 point lower than the final QOLHEQ band predicted. These patients were significantly younger than patients falling within the proposed banding (P < 0.05). There were 22 patients (16.4%) with an actual Global anchor score 1 point higher than the final overall QOLHEQ band predicted. There were no age distribution differences between these patients and patients falling within the proposed banding.


Number of cases



strongly37 4 1 2 1 1.25 1 138 5 1 1 2 1 1.60 2 239 4 1 1 1 1 1.50 1.5 0/1/2/340 6 1 2 2 1 1.50 1.5 1/241 3 3 2.00 2 242 1 1 1.00 1 143 3 1 2 1.33 2 244 2 1 1 2.50 2.5 2/346 2 1 1 1.50 1.5 1/247 3 1 2 1.33 2 248 4 1 2 1 3.00 3 349 2 1 1 3.00 3 2/453 1 1 3.00 3 354 2 1 1 2.00 2 1/355 3 1 2 2.67 3 356 1 1 3.00 3 357 1 1 2.00 2 259 1 1 3.00 3 360 1 1 3.00 3 361 1 1 2.00 2 262 1 1 2.00 2 264 1 1 3.00 3 365 3 3 4.00 4 466 2 2 0.00 0 070 2 2 3.00 3 371 2 1 1 3.50 3.5 3/473 1 1 3.00 3 382 1 1 3.00 3 3Total 134 30 31 42 25 6HRQoL, health-related quality of life.

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Table S4.11 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Emotions subscale encountered in this study and corresponding mean, median and mode of the Emotions anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ Emotions score (baseline)

Number of cases

Emotions anchor question (baseline)(indicating HRQoL impairment in the Emotions domain)


strongly0 17 17 0.00 0 01 13 11 1 1 0.23 0 02 16 15 1 0.06 0 03 25 18 6 1 0.32 0 04 17 10 4 3 0.59 0 05 22 10 9 3 0.68 1 06 25 9 10 4 2 0.96 1 17 20 7 6 5 2 1.10 1 0HRQoL, health-related quality of life.

SYMPTOMS SUBSCALE DUTCH SCORESsymptoms subscale dutch – mean, median and mode of the symptoms anchor per score


Table S4.9 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Symptoms subscale encountered in this study and corresponding mean, median and mode of the Symptoms anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ Symptoms score (baseline)

Number of cases

Symptoms anchor question (baseline) (indicating HRQoL impairment in the Symptoms domain)

Mean Median ModeNot at all Slightly Moderately Strongly

Very strongly

0 3 2 1 0.33 0 01 3 1 2 0.67 1 12 5 1 3 1 1.00 1 13 12 10 2 1.17 1 14 12 1 7 3 1 1.33 1 15 12 10 2 1.33 1 16 26 2 15 6 3 1.38 1 17 32 1 12 10 9 1.84 2 18 17 4 10 2 1 2.00 2 29 24 7 10 5 2 2.08 2 210 26 1 1 13 8 3 2.42 2 211 27 2 8 15 2 2.63 3 312 23 2 9 9 3 2.57 3 2/313 21 1 3 14 3 2.90 3 314 14 3 10 1 2.86 3 315 8 6 2 3.25 3 316 8 4 4 3.50 3.5 3/417 6 1 3 2 3.17 3 318 5 2 3 3.60 4 419 6 2 4 3.67 4 420 3 1 2 3.67 4 421 1 1 4.00 4 4Total 294 9 77 79 96 33HRQoL, health-related quality of life.

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symptoms subscale dutch – tested severity bands

Table S4.10 Kappa coefficients of agreement for different proposed sets of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands for the Symptoms subscale.

Band no.

Possible QOLHEQ Symptoms subscale score bandings (indicating HRQoL impairment in the Symptoms domain)

Coefficient of agreement (κ) with Symptoms anchor questionNot at all Slightly Moderately Strongly Very strongly

1 0 1-7 8-10 11-15 ≥16 0.5362 0-1 2-7 8-10 11-15 ≥16 0.5373 0 1-7 8-12 13-15 ≥16 0.5044 0-1 2-7 8-12 13-15 ≥16 0.5055 0 1-7 8-10 11-17 ≥18 0.5276 0-1 2-7 8-10 11-17 ≥18 0.5287 0 1-7 8-12 13-17 ≥18 0.4948 0-1 2-7 8-12 13-17 ≥18 0.495


overview of dutch symptoms scores falling outside the proposed banding

N=28 patients (9.5%) had a Symptoms anchor score > 1 point outside of that predicted by the final Symptoms band. There were 53 (18.0%) patients with an actual Symptoms anchor score 1 point lower than the final Symptoms band predicted. There were 49 patients (16.7%) with an actual Symptoms anchor score 1 point higher than the final Symptoms band predicted. There were no sex and age distribution differences between the patients falling within the proposed banding and those falling outside it.

EMOTIONS SUBSCALE DUTCH SCORESemotions subscale dutch – mean, median and mode of the emotions anchor per score


Table S4.11 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Emotions subscale encountered in this study and corresponding mean, median and mode of the Emotions anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).


Number of cases



strongly0 17 17 0.00 0 01 13 11 1 1 0.23 0 02 16 15 1 0.06 0 03 25 18 6 1 0.32 0 04 17 10 4 3 0.59 0 05 22 10 9 3 0.68 1 06 25 9 10 4 2 0.96 1 17 20 7 6 5 2 1.10 1 0HRQoL, health-related quality of life.

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Table S4.13 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Functioning subscale encountered in this study and corresponding mean, median and mode of the Functioning anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ Functioning score (baseline)

Number of cases

Functioning anchor question (baseline) (indicating HRQoL impairment in the Functioning domain)


Very strongly

0 21 19 2 0.10 0 01 8 7 1 0.25 0 02 15 7 3 5 0.87 1 03 25 9 10 5 1 0.96 1 14 17 5 9 3 0.88 1 15 21 4 11 4 2 1.19 1 16 18 2 10 5 1 1.28 1 17 28 4 9 8 6 1 1.68 2 18 20 3 7 8 2 1.45 1.5 29 30 8 12 6 4 2.20 2 210 23 1 3 6 12 1 2.39 3 311 11 5 4 2 2.73 3 212 8 4 4 2.50 2.5 2/313 8 2 4 2 3.00 3 314 6 1 1 1 3 2.00 2.5 315 4 1 2 1 2.75 3 316 9 1 5 3 3.22 3 317 5 3 2 3.40 3 318 6 1 5 3.83 4 419 3 3 4.00 4 420 3 1 1 1 2.67 3 1/3/421 3 2 1 3.33 3 322 2 2 4.00 4 4Total 294 62 75 70 58 29

HRQoL, health-related quality of life.

emotions subscale dutch – tested severity bands

Table S4.12 Kappa coefficients of agreement for different proposed sets of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands for the Emotions subscale.

Band no.

Possible QOLHEQ Emotions subscale score bandings (indicating HRQoL impairment in the Emotions domain)

Coefficient of agreement (κ) with Emotions anchor questionNot at all Slightly Moderately Strongly Very strongly

1 0-5 6-10 11-15 16-17 ≥18 0.5122 0-6 7-10 11-15 16-17 ≥18 0.5003 0-5 6-10 11-15 16-19 ≥20 0.5194 0-6 7-10 11-15 16-19 ≥20 0.507


overview of dutch emotions scores falling outside the proposed banding

N=30 patients (10.2%) had an Emotions anchor score > 1 point outside of that predicted by the final Emotions band. There were 46 (15.6%) patients with an actual Emotions anchor score 1 point lower than the final Emotions band predicted. In this group there were significantly more females (P < 0.05); no age distribution difference was found. There were 65 patients (22.1%) with an actual Emotions anchor score 1 point higher than the final Emotions band predicted. In this group there were no sex or age distribution differences between the patients falling within the proposed banding and those falling outside it.


Number of cases



strongly8 25 8 8 7 2 1.12 1 0/19 21 2 8 6 5 1.67 2 110 17 2 7 5 2 1 1.59 1 111 20 2 3 7 7 1 2.10 2 2/312 10 1 6 3 2.20 2 213 10 2 5 3 2.10 2 214 8 1 3 2 1 1 1.75 1.5 115 6 2 2 1 1 2.17 2 1/216 6 6 3.00 3 317 3 1 2 3.00 4 418 2 1 1 3.50 3.5 3/419 6 1 5 2.50 3 320 1 1 4.00 4 421 1 1 4.00 4 422 1 1 3.00 3 324 2 2 4.00 4 4Total 294 113 72 57 41 11HRQoL, health-related quality of life.


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FUNCTIONING SUBSCALE DUTCH SCORESfunctioning subscale dutch – mean, median and mode of the functioning anchor per score


Table S4.13 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Functioning subscale encountered in this study and corresponding mean, median and mode of the Functioning anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ Functioning score (baseline)

Number of cases

Functioning anchor question (baseline) (indicating HRQoL impairment in the Functioning domain)


Very strongly

0 21 19 2 0.10 0 01 8 7 1 0.25 0 02 15 7 3 5 0.87 1 03 25 9 10 5 1 0.96 1 14 17 5 9 3 0.88 1 15 21 4 11 4 2 1.19 1 16 18 2 10 5 1 1.28 1 17 28 4 9 8 6 1 1.68 2 18 20 3 7 8 2 1.45 1.5 29 30 8 12 6 4 2.20 2 210 23 1 3 6 12 1 2.39 3 311 11 5 4 2 2.73 3 212 8 4 4 2.50 2.5 2/313 8 2 4 2 3.00 3 314 6 1 1 1 3 2.00 2.5 315 4 1 2 1 2.75 3 316 9 1 5 3 3.22 3 317 5 3 2 3.40 3 318 6 1 5 3.83 4 419 3 3 4.00 4 420 3 1 1 1 2.67 3 1/3/421 3 2 1 3.33 3 322 2 2 4.00 4 4Total 294 62 75 70 58 29

HRQoL, health-related quality of life.

202

Table S4.15 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Treament and Prevention subscale encountered in this study and corresponding mean, median and mode of the Treatment and Prevention anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ Treatment and Prevention score (baseline)

Number of cases

Treatment and Prevention anchor question (baseline) (indicating HRQoL impairment in the Treatment and

Prevention domain)


Very strongly

0 8 7 1 0.13 0 01 14 11 3 0.21 0 02 12 10 2 0.17 0 03 19 10 8 1 0.53 0 04 24 12 6 4 2 0.83 0.5 05 21 10 7 4 0.71 1 06 25 11 9 5 0.76 1 07 25 5 13 5 2 1.16 1 18 22 5 9 6 2 1.23 1 19 31 6 11 9 5 1.42 1 110 28 3 9 10 5 1 1.71 2 211 24 5 6 9 3 1 1.54 2 212 15 1 2 9 2 1 2.00 2 213 12 2 4 4 2 2.33 2.5 2/314 4 1 1 1 1 2.50 2.5 1/2/3/415 5 1 1 2 1 2.60 3 316 2 1 1 3.50 3.5 3/417 3 1 1 1 2.67 3 1/3/4Total 294 98 89 68 30 9HRQoL, health-related quality of life.

functioning subscale dutch – tested severity bands

Table S4.14 Kappa coefficients of agreement for different proposed sets of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands for the Functioning subscale.

Band no.

Possible QOLHEQ Functioning subscale score bandings(indicating HRQoL impairment in the Functioning domain)

Coefficient of agreement (κ) with Functioning anchor questionNot at all Slightly Moderately Strongly Very strongly

1 0-1 2-7 8-10 11-16 ≥17 0.5282 0-2 3-7 8-10 11-16 ≥17 0.5363 0-4 5-7 8-10 11-16 ≥17 0.5294 0-1 2-8 9-10 11-16 ≥17 0.5305 0-2 3-8 9-10 11-16 ≥17 0.5376 0-4 5-8 9-10 11-16 ≥17 0.5317 0-1 2-7 8-11 12-16 ≥17 0.5208 0-2 3-7 8-11 12-16 ≥17 0.5289 0-4 5-7 8-11 12-16 ≥17 0.52210 0-1 2-8 9-11 12-16 ≥17 0.52111 0-2 3-8 9-11 12-16 ≥17 0.52912 0-4 5-8 9-11 12-16 ≥17 0.52313 0-1 2-7 8-12 13-16 ≥17 0.51614 0-2 3-7 8-12 13-16 ≥17 0.52415 0-4 5-7 8-12 13-16 ≥17 0.51816 0-1 2-8 9-12 13-16 ≥17 0.51717 0-2 3-8 9-12 13-16 ≥17 0.52518 0-4 5-8 9-12 13-16 ≥17 0.52019 0-1 2-7 8-10 11-17 ≥18 0.52620 0-2 3-7 8-10 11-17 ≥18 0.53321 0-4 5-7 8-10 11-17 ≥18 0.52722 0-1 2-8 9-10 11-17 ≥18 0.52723 0-2 3-8 9-10 11-17 ≥18 0.53524 0-4 5-8 9-10 11-17 ≥18 0.52925 0-1 2-7 8-11 12-17 ≥18 0.51726 0-2 3-7 8-11 12-17 ≥18 0.52527 0-4 5-7 8-11 12-17 ≥18 0.51928 0-1 2-8 9-11 12-17 ≥18 0.51929 0-2 3-8 9-11 12-17 ≥18 0.52730 0-4 5-8 9-11 12-17 ≥18 0.52131 0-1 2-7 8-12 13-17 ≥18 0.51332 0-2 3-7 8-12 13-17 ≥18 0.52133 0-4 5-7 8-12 13-17 ≥18 0.51634 0-1 2-8 9-12 13-17 ≥18 0.51535 0-2 3-8 9-12 13-17 ≥18 0.52336 0-4 5-8 9-12 13-17 ≥18 0.517The final chosen band is highlighted in yellow. HRQoL, health-related quality of life.

overview of dutch functioning scores falling outside the proposed banding

N=25 patients (8.5%) had a Functioning anchor score > 1 point outside of that predicted by the final Functioning band. There were 69 (23.5%) patients with an actual Functioning anchor score 1 point lower than the final Functioning band predicted. There were 60 patients (20.4%) with

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an actual Functioning anchor score 1 point higher than the final Functioning band predicted. There were no sex or age distribution differences between the patients falling within the proposed banding and those falling outside it.

TREATMENT AND PREVENTION SUBSCALE DUTCH SCOREStreatment and prevention subscale dutch – mean, median and mode of the treatment and prevention anchor per score


Table S4.15 Number of patients with each Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) subscore for the Treament and Prevention subscale encountered in this study and corresponding mean, median and mode of the Treatment and Prevention anchor question scores: 0 (‘not al all’) to 4 (‘very strongly’).

QOLHEQ Treatment and Prevention score (baseline)

Number of cases

Treatment and Prevention anchor question (baseline) (indicating HRQoL impairment in the Treatment and

Prevention domain)


Very strongly

0 8 7 1 0.13 0 01 14 11 3 0.21 0 02 12 10 2 0.17 0 03 19 10 8 1 0.53 0 04 24 12 6 4 2 0.83 0.5 05 21 10 7 4 0.71 1 06 25 11 9 5 0.76 1 07 25 5 13 5 2 1.16 1 18 22 5 9 6 2 1.23 1 19 31 6 11 9 5 1.42 1 110 28 3 9 10 5 1 1.71 2 211 24 5 6 9 3 1 1.54 2 212 15 1 2 9 2 1 2.00 2 213 12 2 4 4 2 2.33 2.5 2/314 4 1 1 1 1 2.50 2.5 1/2/3/415 5 1 1 2 1 2.60 3 316 2 1 1 3.50 3.5 3/417 3 1 1 1 2.67 3 1/3/4Total 294 98 89 68 30 9HRQoL, health-related quality of life.

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treatment and prevention subscale dutch – tested severity bands

Table S4.16 Kappa coefficients of agreement for different proposed sets of the Dutch Quality Of Life in Hand Eczema Questionnaire (QOLHEQ) impairment bands for the Treatment and Prevention subscale.

Band no.

Possible QOLHEQ Treatment and Prevention subscale score bandings

(indicating HRQoL impairment in the Treatment and Prevention domain)

Coefficient of agreement (κ) with Treatment and Prevention anchor questionNot at all Slightly Moderately Strongly Very strongly

1 0-4 5-9 10-13 14-15 ≥16 0.3852 0-6 7-9 10-13 14-15 ≥16 0.4023 0-4 5-11 12-13 14-15 ≥16 0.3374 0-6 7-11 12-13 14-15 ≥16 0.3575 0-4 5-9 10-13 14-16 ≥17 0.3826 0-6 7-9 10-13 14-16 ≥17 0.3987 0-4 5-11 12-13 14-16 ≥17 0.3338 0-6 7-11 12-13 14-16 ≥17 0.3539 0-4 5-9 10-14 15 ≥16 0.38010 0-6 7-9 10-14 15 ≥16 0.39611 0-4 5-11 12-14 15 ≥16 0.33112 0-6 7-11 12-14 15 ≥16 0.35113 0-4 5-9 10-14 15-16 ≥17 0.37614 0-6 7-9 10-14 15-16 ≥17 0.39315 0-4 5-11 12-14 15-16 ≥17 0.32716 0-6 7-11 12-14 15-16 ≥17 0.34717 0-4 5-9 10-15 16 ≥17 0.36518 0-6 7-9 10-15 16 ≥17 0.38319 0-4 5-11 12-15 16 ≥17 0.31520 0-6 7-11 12-15 16 ≥17 0.336The final chosen band is highlighted in yellow. HRQoL, health-related quality of life.

overview of dutch treatment and prevention scores falling outside the proposed banding

N=47 patients (16.0%) had a Treatment and Prevention anchor score > 1 point outside of that predicted by the final Treatment and Prevention band. There were 37 (12.6%) patients with an actual Treatment and Prevention anchor score 1 point lower than the final Treatment and Prevention band predicted. In this group there were significantly more females (P < 0.01); no age distribution difference was found. There were 72 patients (24.5%) with an actual Treatment and Prevention anchor score 1 point higher than the final Treatment and Prevention band predicted. In this group there were no sex or age distribution differences between the patients falling within the proposed banding and those falling outside it.

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University of Groningen Hand eczema Oosterhaven, Jart...version of the Quality Of Life in Hand...

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