Japanese version of the Family Dermatology Life Quality Index: Translation and validation

Skin conditions affect the quality of life (QoL) of patients and their family. To assess family members' QoL, a questionnaire uniquely designed for family members is necessary. We translated the Family Dermatology Life Quality Index (FDLQI), originally created and validated by Basra et al., into Japanese, and evaluated its reliability and validity. For psychometric evaluations, 150 dermatology patients and their family members were included. The Japanese version of the FDLQI showed high test–retest reliability (intraclass correlation coefficient = 0.95) and internal consistency reliability (Cronbach's alpha = 0.86). FDLQI scores significantly correlated with DLQI scores (r = 0.58, P < 0.01, Spearman's rho) and global question (GQ) which measured the patient's skin condition on a visual analog scale (r = 0.36, P < 0.01). Family members of patients with inflammatory skin diseases showed higher FDLQI scores than those with isolated lesions, but the difference was not statistically significant (P = 0.062, Mann–Whitney U‐test). Responsiveness to change was demonstrated in a group in which the patient's skin condition was assessed as improved (n = 37, r = 0.46, P < 0.01) but not in that in which it became worse. The difference of the change between the two groups was statistically significant (P < 0.01). Additionally, the change in FDLQI scores and GQ were significantly correlated (r = 0.40, P < 0.01). Exploratory factor analysis suggested essential unidimensionality of the instrument. We showed acceptable validity and responsiveness of this Japanese version of FDLQI. Further clinical epidemiological studies are required to confirm this.     

The Children's Dermatology Life Quality Index: validation of the cartoon version

BACKGROUND: In 1995 the Children's Dermatology Life Quality Index (CDLQI) was developed as a tool to allow quality of life assessment of children with skin conditions. This initial questionnaire was in a written format. OBJECTIVES: Using the same validated questions, a full-colour cartoon version has been developed. The aim of this study was to validate this against the initial written questionnaire in a three-part study. METHODS: The first part of the study piloted the use of both versions in an outpatient setting. One hundred and one children completed both versions of the CDLQI in a random order. A further 66 children completed the cartoon CDLQI in outpatients, and subsequently completed the cartoon version on the same day at home, which was returned by post. The scores were compared. In the second part, in more controlled conditions to eliminate parental and investigator bias, 107 children with current dermatological problems were administered both versions of the CDLQI in a random order. The scores were analysed, and time to complete each version, and the child and parental preferences, were recorded. The third part assessed compliance by asking 546 children recently reviewed in dermatology clinics to return a single completed postal CDLQI. Half of the children were given the text, and half the cartoon version. RESULTS: The median age of participating children was 11 years. There was no significant difference in scores between the two versions in both parts 1 and 2, but the cartoon version was completed faster (median 90 s) than the written version (median 120 s) (P < 0.0001). Both children and their parents significantly preferred the cartoon version and found it easier to use. Forty-six per cent of the postal CDLQI questionnaires were returned; there was no difference in compliance between the two versions. CONCLUSIONS: The cartoon CDLQI is equivalent to the previously validated written CDLQI version, but is faster and easier for children to use, and is preferred by both children and parents.     

Dermatology Life Quality Index: influence of an illustrated version

BACKGROUND: An illustrated version of the Dermatology Life Quality Index (DLQI) was developed in order to improve the ease with which this standard questionnaire is answered. OBJECTIVES: To compare the illustrated version with the text-only version of the DLQI. METHODS: The two versions were administered to 206 patients attending Dermatology outpatient clinics. The time taken to complete either the illustrated or the text-only version was noted in 52 additional patients. RESULTS: One hundred and ninety-one of 206 patients completed both questionnaires satisfactorily. Their mean DLQI scores were 6.4 (median 4.0, lower quartile 1.0, upper quartile 11.0) for the illustrated version and 6.3 (median 4.0, lower quartile 1.0, upper quartile 10.0) for the text-only version. For the 98 patients who answered the illustrated version first, the mean DLQI scores were 6.9 (median 4.0, lower quartile 1.9, upper quartile 11.9) for the illustrated version and 6.4 (median 4.0, lower quartile 1.8, upper quartile 11.0) for the text-only version. For the 93 patients who answered the text-only version first, the mean DLQI scores were 5.9 (median 4.0, lower quartile 1.7, upper quartile 10.2) for the illustrated version and 6.2 (median 5.0, lower quartile 0.5, upper quartile 9.5) for the text-only version. The median time taken to complete the text-only version was 124 s (mean +/- SD 126 +/- 65, n = 27) and 88 s (mean +/- SD 101 +/- 52, n = 25) for the illustrated version (P = 0.08). There was a very close correlation (r = 0.98) between the scores of the text-only and the illustrated versions; 82.2% of patients either scored the same or had a DLQI score difference of only 1. One hundred and seven (59.8%) patients preferred using the illustrated version and 66 (36.9%) preferred the text-only version. One hundred and four (57.5%) found the illustrated version easier to use. CONCLUSIONS: The illustrated version was superior to the text-only version in terms of patient preference and ease of use, but it was not possible to demonstrate exact equivalence between the two versions.     

The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease

BACKGROUND: Skin diseases are known to have a major impact on the lives of patients and their families. Many instruments are available to measure the health-related quality of life (HRQoL) of patients but no measure has been developed so far to quantify the secondary impact on family members of the patients. OBJECTIVES: To develop and validate a dermatology-specific instrument to measure the adverse impact on the HRQoL of family members of patients with skin disease. METHODS: Detailed semi-structured interviews were conducted with family members of patients to identify different aspects of HRQoL affected. An initial draft version of the questionnaire based on the main topic areas was pilot tested to assess the face and content validity. A 10-item questionnaire, the Family Dermatology Life Quality Index (FDLQI), was finalized after modifications to the draft questionnaire based on feedback from families and dermatology professionals and on item reduction. Psychometric evaluation was conducted on a new cohort of family members (n = 132) who completed the FDLQI and the patients (n = 109) who completed the Dermatology Life Quality Index (DLQI). RESULTS: Fifty-nine different aspects of family members' HRQoL were identified from the analysis of the interviews, which were categorized into main topic areas. Factor analysis of 10 items of the final questionnaire revealed two factors and together these explained 60% of the common variance. The FDLQI demonstrated high internal consistency (Cronbach's alpha = 0.88) and test-retest (intraclass correlation coefficient = 0.94) reliabilities. The responsiveness of the instrument to change was shown by significant change in the family members' FDLQI scores in cases where patients' clinical condition either improved or worsened. Construct validity was assessed by testing a number of a priori hypotheses. A strong correlation was seen between the family members' FDLQI scores and patients' DLQI scores (r = 0.69), a significantly higher FDLQI score was seen for inflammatory skin diseases compared with noninflammatory diseases/isolated lesions (P < 0.0001), and there was a positive relationship between the family members' FDLQI scores and patients' disease severity (r = 0.49). CONCLUSIONS: The FDLQI is simple and practical and seems to have the potential to be used as an additional outcome measure in clinical practice and evaluation research.     

Sensitivity of the Dermatology Life Quality Index to clinical change in patients with psoriasis

BACKGROUND: Quality of life is increasingly recognized as an important outcome measure in dermatology. The Dermatology Life Quality Index (DLQI) is a self-administered questionnaire designed to measure the impact of skin diseases on patients' quality of life. OBJECTIVES: To assess the responsiveness of the DLQI to variations in clinical status as measured by the Self-Administered Psoriasis Area and Severity Index (SAPASI) in a large sample of in-patients with psoriasis. METHODS: The SAPASI and the DLQI were completed by 359 in-patients with psoriasis at hospital admission and 4 weeks after discharge. Changes in SAPASI scores were used to categorize patients as improved, unchanged or worsened. Next, these groups were compared with one another with regard to the change in DLQI scores. RESULTS: Four weeks after discharge, both mean SAPASI scores and mean DLQI scores were significantly lower than at admission (P < 0.001). In improved patients, the DLQI score decreased significantly more than in worsened patients (P < 0.001), and tended to decrease more than in unchanged patients (P = 0.07). The difference in DLQI score change between improved patients and unchanged or worsened patients grouped together was highly significant (P < 0.001); also, it remained significant or nearly significant when the analysis was performed on subsets of patients based on gender and age range. CONCLUSIONS: This study contributes to building evidence of validity for the DLQI, because the instrument demonstrated the ability to detect small but meaningful changes in clinical status over time in a large sample of patients with psoriasis.     

An audit of the impact of a consultation with a paediatric dermatology team on quality of life in infants with atopic eczema and their families: further validation of the Infants' Dermatitis Quality of Life Index and Dermatitis Family Impact score

BACKGROUND: Atopic dermatitis (AD) accounts for 10-20% of referrals to secondary care dermatology, often requiring multiple visits and occupying much valuable time and resources. OBJECTIVES: We audited the usefulness (ease of use, reliability and sensitivity to change) of two simple and easy to use quality of life (QoL) measures, the Infants' Dermatitis Quality of Life Index (IDQOL) and Dermatitis Family Impact (DFI), for assessing the impact on QoL of AD in infants and their families in a routine clinical setting. We also examined the impact of an initial consultation with a dermatology team on AD severity and QoL impairment from the parent's perspective. METHODS: The parents of 203 infants (mean age 19.8 months) with AD attending paediatric dermatology clinics completed the DFI and IDQOL. The parents of 50 of these infants completed both questionnaires before first and second consultations. RESULTS: In the 203 children the mean of both the IDQOL and DFI scores was 8.47 (median 8 and 7 and SD 5.8 and 6.5, respectively). The IDQOL and DFI correlated well (r(s) = 0.776, P < 0.0001). The parent's assessment of the global severity of AD correlated well with the IDQOL score (r(s) = 0.636, P < 0.0001) but less well with the DFI (r(s) = 0.394, P < 0.001). The highest-scoring IDQOL items were itching and scratching, problems at bathtime and time taken to fall asleep. The highest-scoring DFI items were tiredness/exhaustion, sleep loss and emotional distress. In both measures these domains also correlated most strongly with eczema severity. After dermatology consultation the median global severity score, rated by 50 parents, fell from 2 (SD 0.83) to 1 (SD 0.8; 95% confidence interval, CI 0.5-1), the median IDQOL score fell from 8 (SD 5.92) to 5.5 (SD 5.92; 95% CI 2-5.5) and the median DFI score fell from 9 (SD 6.45) to 3 (SD 6.56; 95% CI 2-5.5). In 50 infants the median IDQOL scores for those infants with global AD severity scores of 1, 2 and 3 were 5 (SD 5.65), 8 (SD 4.27) and 14 (SD 5.67), respectively and improved by 10%, 38% and 64%, respectively while the median DFI scores improved by 54%, 56% and 79%, respectively. The most improved IDQOL items were the time taken to get to sleep and difficulty at mealtimes and the most improved DFI domains were tiredness/exhaustion and emotional distress in the parents. CONCLUSIONS: We have provided further important information on the effects of AD on infants and their families using the IDQOL and DFI QoL measures. We demonstrate the usefulness of these measures in routine clinical management of AD and show the beneficial effect for both infants and parents of the initial consultation by a dermatology team in a secondary care setting.     

Quality of life in mothers of children with psoriasis

Background

Patients' and their mothers' quality of life is severely affected by childhood psoriasis. Almost all children have a chronic illness that lasts until adulthood, which puts them at risk for lifelong difficulties like stigma, psychiatric comorbidity, and suicide.

Objective

Evaluation of the effects of childhood psoriasis on the mothers' quality of life was the project's primary objective.

Subjects and Methods

100 mothers of children with various kinds of psoriasis participated in the study. The Family Dermatology Life Quality Index (FDLQI) was used to evaluate the mothers' quality of life.

Results

The mother's FDLQI score was between 3 and 25, with a mean of 13. In terms of how the FDLQI was interpreted, 8 moms had an incredibly enormous impact, 63 mothers had a very significant impact, 26 mothers had a moderate impact, and 3 mothers had a modest impact. We discovered a substantial direct link between the mother's FDLQI and the children's PASI scores. Furthermore, we discovered that scalp and pustular psoriasis had the highest FDLQI scores, indicating a poor quality of life.

Conclusion

Both the quality of life for affected children and their cares may be negatively impacted by childhood psoriasis. Age of the children, PASI score, and kind of psoriasis can all have an impact on how psoriasis in childhood affects the mother.     

Quality of life and psychological status of patients with pemphigus vulgaris using Dermatology Life Quality Index and General Health Questionnaires

Pemphigus vulgaris with painful chronic blisters and/or erosions on skin and mucosa can impair quality of life (QOL). Therapeutic modalities in the long run can have additional negative impact. There are few studies that have focused on QOL of such patients except in treated cases. The aim of this study was to describe the effect of the disease per se on QOL before receiving treatment and evaluation of psychological status of the patients and its effect on their QOL. A total of 61 patients with newly diagnosed non-treated pemphigus vulgaris participated in the study. The Persian version of the Dermatology Life Quality Index (DLQI) questionnaire was used to evaluate their QOL and the 28-item General Health Questionnaire (GHQ-28) for their psychological status. In this study, the mean DLQI score was 10.9 ± 6.9. QOL was worse in patients with nasal and pharynx involvement, with positive Nikolsky sign, patients with severe skin involvement and those who showed the symptom of itching. There was a negative correlation between DLQI score and duration of the disease. More than 77% of patients experienced anxiety and depression with more impaired QOL. In conclusion, pemphigus vulgaris is responsible for great alteration in QOL, especially in its severe form. The disease in its initial stage may have greater impact on the QOL. The high probability of anxiety and depression in these patients and its negative effect on QOL should be taken into account in the management of these patients right from the start of the treatment.     

Impaired quality of life of adults with skin disease in primary care

BACKGROUND: Although 75% of skin problems are managed exclusively in primary care, most information on the impact of skin disease on quality of life is hospital based. OBJECTIVES: To examine the ease of use of the Dermatology Life Quality Index (DLQI) in primary care and to measure the handicap levels found, analysed by skin disease, sex and age. METHODS: The handicap levels identified were compared with those published for patients with the same conditions attending hospital clinics. Some conditions that rarely present in secondary care were also studied. RESULT:S The overall mean +/- SD DLQI score was 7.37 +/- 5.71 (women 7.8 +/- 5.8, n = 196; men 6.8 +/- 5.6, n = 145). The scores for separate diseases were similar in ranking and only slightly lower than those in hospital-based studies. The possibility of bias towards surveying an unrepresentative sample of patients is discussed. There was no correlation between age and DLQI score. CONCLUSIONS: The DLQI proved easy to use in general practice. The impact of skin diseases on the quality of life of patients seen in primary care is comparable with that of patients seen in secondary care. This information could be used to inform the planning of services for these patients.     

Development and validation of the Dermatomyositis Skin Severity Index

BACKGROUND: Dermatomyositis is an autoimmune inflammatory muscle disease with characteristic cutaneous findings of heliotrope eruption, Gottron's papules and a photodistributed eruption with poikiloderma. OBJECTIVES: To develop and validate a tool to assist with objective assessment of the skin disease of dermatomyositis. METHODS: A skin severity index was developed; content validity was evaluated by a panel of experts, and construct validity was assessed by convergence with other measures of disease severity including physician's global assessment of disease, specific skin disease changes (ulceration, poikiloderma and pruritus), and quality of life. Test and retest reliability and interobserver reproducibility were determined. RESULTS: In total, 98 subjects were enrolled. The Dermatomyositis Skin Severity Index (DSSI) showed significant correlation to the physician's global assessment, assessments of poikiloderma and self-assessment of pruritus. Inter-rater reliability showed strong correlations from 0.73 to 1. Test-retest (intrarater reliability) was completed on 33 subjects, and showed correlations above 0.75. The ability of this tool to detect clinical changes with treatment has not been fully evaluated. CONCLUSIONS: The DSSI is a valid and reliable measure of skin disease severity in dermatomyositis and can be used in future clinical trials as an assessment tool.     

儿童皮肤病生活质量指数中文版的信度、效度评价

目的评估儿童皮肤病生活质量指数(CDLQI)中文版的信度和效度。方法对广东省中医院151名儿童皮肤病患者进行CDLQI中文版的测试。结果重测信度,计算组内相关系数(ICC)为0.820;Gutt-man分半信度为0.814;Cronbach′sα系数为0.816。各条目得分与其维度得分之间相关系数r均在0.540以上;各维度间的相关系数波动在0.232~0.452;除日常生活领域,各维度与总分的相关系数均在0.60以上。以主成分分析法进行因素萃取,并以Varimax法进行因素转轴,共萃取累计解释变异量大于83.09%的因素。皮肤病患者与其他疾病及健康者CDLQI分值的分布差异有统计学意义(Z=-7.207,-7.164;P=0.000)。结论 CDLQI中文版具有比较好的信度和效度,可在临床研究中将其用于儿童皮肤病生活质量的评估。     

A cross‐sectional study using the Children’s Dermatology Life Quality Index (CDLQI) in childhood psoriasis: negative effect on quality of life and moderate correlation of CDLQI with severity scores

Background Juvenile psoriasis is a chronic and incurable skin disease that affects approximately 0·7% of children. Objectives To achieve more insight into the quality of life (QoL) in childhood psoriasis and to investigate whether disease severity scores correlate with QoL scores. Methods All consecutive patients with juvenile plaque psoriasis (≤ 18 years old) who visited our outpatient department were included. At baseline, the Children’s Dermatology Life Quality Index (CDLQI) questionnaire was completed and disease severity was assessed by the Psoriasis Area and Severity Index (PASI) and the Physician Global Assessment (PGA). Results Thirty‐nine patients were included in the study. A median CDLQI of 6 [interquartile range (IQR) 5–9] was reported. Median PASI was 6·3 (IQR 3·3–8·2) and median PGA was 2 (IQR 1–3). The correlation coefficient between PASI and CDLQI was 0·47 (P = 0·003), whereas the correlation coefficient between PGA and CDLQI was 0·51 (P = 0·001). Conclusions The negative effect on QoL in juvenile psoriasis was confirmed in the largest cohort presented up to now. The correlation between disease severity scores and disease‐related QoL in children with psoriasis is only moderate. Therefore, both clinical outcome parameters (PASI, PGA) and measures of QoL (CDLQI) should be included in adequate, patient‐oriented clinical decision making.     

The Children's Dermatology Life Quality Index (CDLQI): initial validation and practical use

Summary Skin disease can cause severe disability and handicap in children. Measurement of the impact of skin disease on the quality of life is required to aid clinical decision-making, for clinical research, for audit of paediatric dermatology services, and for political reasons, to aid arguments for more resources for the care of children with skin disease. Adult measures are inappropriate, as the lives of children differ markedly from those of adults. The purpose of this study was to create and initially validate a simple practical questionnaire for use in children. One hundred and sixty-nine children, aged 3–16 years, attending a paediatric dermatology clinic, wrote down, with the help of their parents, all the ways in which their skin disease affected their lives. One hundred and eleven different aspects were identified; 10 questions were composed to cover these aspects, using a structure similar to the Adult Dermatology Life Quality Index. This draft questionnaire was piloted on two series, totalling 40 children, and minor alterations were made to improve clarity. The Children's Dermatology Life Quality Index (CDLQI) questionnaire (maximum score 30) was then given to a further 233 dermatology paediatric out-patients (CDLQI mean = 5.1, SD = 4.9), 47 normal controls (mean 0.4, 0.7) and 55 control patients attending a general paediatric clinic (mean 0.7, 2.5). The CDLQI scores for eczema (mean = 7.7, 5.6, n = 47), psoriasis (5.4, 5.0, n = 25) and acne (5.7, 4.4, n = 40), were all highly significantly greater than for moles and naevi (2.3, 2.9, n = 29). The highest mean score was that for scabies (mean = 9.5, 10.5, n = 6). Overall, the highest scoring questions (each maximum score 3) related to symptoms (mean = 1.05, n = 233), feelings (0.90), swimming and sports (0.51), sleep (0.49) and treatment effects (0.47), with the question on effects on friendships (0.18) scoring least. Forty-six additional patients completed the CDLQI on two occasions, with a 4-day interval to check reliability of test-retesting. The standard deviation of the differences between pairs (2.5) was substantially less than the standard deviation of the measurements themselves (before = 4.79, after = 5.08). confirming acceptable repeatability. This study has confirmed the major impact of widespread inflammatory skin disease, in particular atopic eczema, on the quality of life of children. Although further validation is required, the CLDQI provides a new technique for comparative purposes.     

A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases

BACKGROUND: Chronic disease can have physical and psychological effects which affect social functioning. These effects can be better understood from the perspective of parent and child by the use of health-related quality of life (HRQL) measures. Various HRQL measures are now available, of which generic health measures have been the most widely used. These permit comparison between different diseases and also the normal population. OBJECTIVES: To cross-validate a new generic HRQL proxy measure for children, the Children's Life Quality Index (CLQI), with an established speciality-specific dermatological questionnaire, the Children's Dermatology Life Quality Index (CDLQI), in a group of children with chronic skin diseases. The impairment of HRQL in the same group of children with skin disease was then compared with that associated with other common chronic childhood diseases using the CLQI. METHODS: The CDLQI was completed by 379 children aged 5-16 years with skin disease of more than 6 months' duration. Their parents (n=379) and parents of 161 children aged 5-16 years with other chronic diseases were also asked to complete a proxy measure, the CLQI. RESULTS: Using linear regression analysis, the CLQI and the CDLQI scores showed a strong linear association (rs=0.72, P<0.001) and on a Bland-Altman plot, reasonably good agreement (expressing scores out of 100, the 95% limits of agreement were from -25.5/100 to 26.7/100). In the child's opinion psoriasis and atopic dermatitis (AD) caused the greatest impairment (CDLQI scores of 30.6% and 30.5%), followed by urticaria (20%) and acne (18%). Using the generic CLQI (scored 0-36), from the parental perspective the highest score was for AD (33%), followed by urticaria (28%), psoriasis (27%) and alopecia (19%). Comparing this with children with other chronic diseases, those with cerebral palsy had the highest score (38%), followed in descending order by those with generalized AD (33%), renal disease (33%), cystic fibrosis (32%), urticaria (28%), asthma (28%) and psoriasis (27%). Diseases such as epilepsy (24%) and enuresis (24%) scored higher than diabetes (19%), localized eczema (19%), alopecia (19%) and acne (16%). CONCLUSIONS: Using the CLQI we have shown that HRQL impairment in children with chronic skin disease is at least equal to that experienced by children with many other chronic diseases of childhood, with AD and psoriasis having the greatest impact on HRQL among chronic skin disorders and only cerebral palsy scoring higher than AD. Cross-validation of the CLQI with the CDLQI in the group of children with skin disease demonstrates a strong linear association and good agreement between the two.     

The Infants' Dermatitis Quality of Life Index

BACKGROUND: The impact on quality of life (QOL) caused by atopic dermatitis (AD) has been quantified in children and adults using established QOL measures. However, these are not suitable for use in infants under the age of 4 years, when AD usually develops. OBJECTIVES: To validate a new parent-generated QOL questionnaire, the Infants' Dermatitis QOL Index (IDQOL), which measures the impact of AD on the infant, and to provide further validation of the Family Dermatitis Index (FDI), which measures the impact of a child's dermatitis on the family. METHODS: Parents of 102 predominately caucasian infants under 4 years with AD (34 postal and 68 outpatients) were asked to complete the IDQOL and the FDI on two separate occasions to test for repeat validity. The Infants' Behavioural Check List (BCL) was also given to the study group and to parents of 22 normal control infants. Post-treatment IDQOL and FDI questionnaires were obtained from 25 of the study group. RESULTS: The return rate for initial questionnaires was 87.3% (61 boys, 28 girls) and for retest 70.6%. The mean score for IDQOL was 7.89 and for FDI 8.87. Spearman rank correlation between the IDQOL and FDI was high (r = 0.87). Correlations of IDQOL and FDI with clinical severity assessment by parents were lower (r = 0.58 for IDQOL and r = 0.5 for FDI). Test-retest data for IDQOL and FDI confirmed repeatability, there being negligible differences between the pairs using the method of Bland and Altman. The three highest scoring questions for IDQOL referred to itching and scratching, mood change and sleep disturbance. For the FDI they were parental sleep disturbance, tiredness and exhaustion, and emotional distress. Post-treatment questionnaires from 25 patients indicated sensitivity to clinical change with both IDQOL and FDI. Parameters of behaviour measured using the BCL in 82 study infants and 22 controls showed greater problems with frequent night-time wakening (43% vs. 4.5%) and miserable mood changes (24.4% vs. 9%) in the study infants. CONCLUSIONS: Initial validation of the IDQOL and further validation of the FDI show good test-retest repeatability and apparent sensitivity to change with treatment. The effect on health-related QOL as measured by these methods is poorly correlated with clinical severity, confirming that QOL measures should be used in conjunction with clinical measures for global assessments of disease impact. This work requires further validation but suggests that QOL measures may be useful as outcome measures in clinical practice and research. Their simple construction allows quick and easy use, which is particularly valuable in large-scale and postal studies.     

Quality of life in health care of non‐melanoma skin cancer – results of a pilot study

Background: Modern patient‐oriented medicine increasingly involves psychosocial aspects of disease processes in therapy evaluations. We conducted a pilot study on the implementation of a suitable device assessing the quality of life of patients with non‐melanoma skin cancer (NMSC) in clinical routine. Patients and Methods: 52 patients with NMSC were asked to fill out the German version of the Dermatology Life Quality Index (DLQI) by A.Y. Finlay. Additionally, one‐third of the patients were evaluated by the treating physicians. Results: The questionnaire was well‐accepted and completed within a few minutes. Less than 1 % values were missing with respect to individual items. 31 % of patients experienced a moderate to strong impairment of the quality of life. This impairment involved symptoms, emotions, everyday activities, and leisure activities, whereas work and school were of minor importance. The variables age, gender, and diagnosis were of little importance. Conclusions: The limited number of publications available necessitates a step‐wise introduction of this topic into the German literature. Data on quality of life could be relevant for the inclusion of NMSC onto the list of occupational diseases in occupations with high UV exposure. Sufficient data have to be generated in follow‐up studies of longitudinal design that are based on the present pilot study.     

The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index

Background Severe skin diseases, such as epidermolysis bullosa (EB), may have a strong impact not only on patients but also on caregivers. A specific questionnaire evaluating the family impact of dermatological conditions has been created, the Family Dermatology Life Quality Index (FDLQI), but it has not yet been translated in Italian and validated. Objective To evaluate the burden of recessive dystrophic EB on family caregivers, using for the first time the Italian version of the FDLQI, and to validate the instrument. Methods Patients with recessive dystrophic EB participated in a postal survey enquiring about the burden of EB on family caregivers. They completed the Family Strain Questionnaire and the FDLQI and they marked on a silhouette of the human body the skin lesion distribution. Results Data on 62 family caregivers were collected. The overall mean FDLQI score was 9.8. The most frequently reported problems were the time spent on looking after the patient, emotional distress, physical well‐being, and increased household expenditure. FDLQI scores were higher in family caregivers of patients between 10 and 20 years. The Italian FDLQI showed high internal consistency, construct and convergent validity. Factor analysis revealed the presence of one factor structure underlying the items of the FDLQI, which explained 51.5% of the total variance, very similar to the original questionnaire (55.8%). Conclusion The Italian version of the FDLQI seems to be a useful tool to evaluate the impact of EB on family caregivers. Further studies are necessary to test this instrument in other dermatological conditions.     

Self-reported skin complaints: validation of a questionnaire for population surveys

BACKGROUND: Estimation of skin diseases in the community is challenging because we do not easily have access to the nonhealthcare-seeking population. A potential tool is a questionnaire asking for self-reported skin complaints. Such an instrument has not yet been developed. OBJECTIVES: To validate a simple instrument assessing skin morbidity in the general adult population, to predict clinical skin morbidity from self-reported skin complaints. METHODS: A questionnaire was drawn up in Norwegian and validated against clinical signs in two samples of an urban population, 100 healthcare-seeking adults in a dermatological clinic, and 100 nonhealthcare-seeking adults. A total self-reported score was calculated and validated against severity of clinical signs (no sign, trivial, moderate or severe). The inter-rater agreement was assessed in a small study including 16 patients from a dermatological clinic. RESULTS: The participation rate was 98%. The sensitivity was 61%, the specificity 69% and the positive predictive value 82% when the caseness criterion was any clinical sign of skin disease. The agreement was good between the two observers for clinical skin morbidity, with kappa = 0.67. CONCLUSIONS: This questionnaire is a simple tool to evaluate skin morbidity in an adult population. The use of self-reported complaints to predict clinical morbidity may be of value in quantifying and exploring skin diseases at the population level. Further studies are needed to improve the instrument. It is our intention to demonstrate the potential usefulness of this questionnaire in a forthcoming population survey in Norway.