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The European Academy of Dermatology and Venereology (EADV) Task Forces on quality of life (QoL) and patient-oriented outcomes and on urticaria and angioedema recommendations for the assessment of Health-related (HR) QoL in all patients with urticaria in research and practice are as follows: to use the DLQI for adults and the CDLQI for children as dermatology-specific and the CU-Q2oL as a disease-specific HRQoL instruments in urticaria; to use generic instruments to provide comparison of data on urticaria with non-dermatologic diseases, or to compare with healthy volunteers or the general population; to select validated HRQoL instruments with appropriate age limits; to present exact numeric data for HRQoL results; correct title of any HRQoL instrument should be used, along with its correct abbreviation and the reference to its original publication, where possible. The EADV TFs discourage the use of non-validated HRQoL instruments and modified HRQoL instruments that have not undergone standard validation., (© 2024 European Academy of Dermatology and Venereology.)

Background: Dermatological research has traditionally concentrated on evaluating mental comorbidities, neglecting positive concepts like happiness. Initial studies indicate that psoriasis and atopic dermatitis (AD) impair the happiness of those affected. Considering global happiness variations, this study aimed to explore the disease- and country-specific differences in disease-related quality of life and happiness, and potential influential factors on heuristic happiness among psoriasis and AD patients in Europe., Methods: A cross-sectional multicentre study was conducted in dermatology departments of university-affiliated hospitals in eight European countries (Austria, Germany, Italy, Malta, Poland, Portugal, Romania and Ukraine) between October 2021 and February 2023. Adult psoriasis and AD patients completed a standardized questionnaire in their native languages, providing data on demographics, disease-related characteristics, disease-related quality of life (Dermatology Life Quality Index, DLQI), heuristic happiness, positive affect (PA), negative affect (NA) and satisfaction with life (SWL). Descriptive analysis and quantile regression were performed., Results: Between psoriasis (n = 723) and AD (n = 316) patients almost no differences were observed in happiness, SWL and NA, except for DLQI and small differences in PA, with AD patients reporting greater impact than psoriasis patients. Country-wise variation emerged in DLQI, heuristic happiness, PA, NA and SWL with Austrian patients displaying the highest levels of happiness, satisfaction and positivity, coupled with higher treatment care and lower disease severity. Quantile regression revealed varying coefficients for predictor variables across quantiles, indicating, for example positive effects on heuristic happiness associated with current or previous receipt of systemic therapies at different quantiles., Conclusion: This study shows notable happiness differences across European countries and significant disease-related variations, particularly with AD patients being more impaired than psoriasis patients. The findings highlight the need for equality in treatment access and support the development of targeted positive psychological interventions to enhance happiness considering country-specific distinctions in future research and health policies for psoriasis and AD patients., (© 2024 The Author(s). Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.)

In this study, the European Academy of Dermatology and Venereology (EADV) Task Forces on Quality of Life and Patient-Oriented Outcomes and Urticaria and Angioedema has examined the Health-Related Quality of Life (HRQoL) measurement in the treatment of urticaria. The Dermatology Life Quality Index was the most frequently used HRQoL instrument in clinical trials on urticaria. Many reports of clinical trials of urticaria gave no exact numeric results related to HRQoL changes, making clear conclusions and comparisons with other studies impossible. The interpretation of HRQoL impairment data is more difficult when assessed by instruments without severity stratification systems. The minimal clinically significant difference (MCID) is a more clinically oriented and relevant parameter than depending on statistically significant changes in HRQoL scores. Therefore, using HRQoL instruments with established MCID data in clinical trials and clinical practice is preferred., (© 2024 the International Society of Dermatology.)

Background: There are few studies on bullying in skin diseases. Persons with skin diseases are especially prone to bullying., Objectives: This component of the project 'Bullying among Dermatologic Patients' aimed to study the prevalence and nature of bullying in patients with skin diseases from different countries and age groups., Methods: Data were collected from participants of international social media groups for patients with skin diseases, in-patients and out-patients with skin diseases, and parents of children with skin diseases from six European countries. School and university students from Poland and Ukraine were asked to answer the question: Have you been bullied because of skin problems?, Results: Bullying was reported in 1016 patients with 36 different skin diseases. Prevalence of self-reported and parental-reported bullying was quite heterogeneous among different countries In total, self-reported bullying was noted by 25.6% of patients with skin diseases during face-to-face consultations, by 63.7% of respondents from international patients' groups and by 12.2% of school and university students. Parental-reported bullying was detected in 34.5% of 3-4 years old children with skin diseases. The peak of bullying prevalence occurred between the ages of 13 and 15. The most prevalent forms of bullying were verbal abuse and social isolation. Physical abuse was the least often reported form of bullying. Only 33.2% of participants talked to anyone about being bullied. Negative long-term effects of bullying were reported by 63% of respondents., Conclusions: Skin disease-related bullying was reported by patients in all centres of the project. The main manifestations of bullying were similar in different countries and among patients with different skin diseases. International activities aimed to decrease or prevent skin disease-related bullying in different age groups are needed. These activities should be multidirectional and target teachers, parents of classmates and classmates of children with skin diseases, patients' parents and patients themselves., (© 2023 European Academy of Dermatology and Venereology.)

Background: Participating members of the European Academy of Dermatology and Venereology Task Forces on quality of life (QoL) and Patient Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa initiated data collection in 9 European countries and formed the list of the most relevant topics for acne patients., Objective: The aim of this study was to develop a new acne-specific health-related QoL instrument based on the list of the most relevant topics for acne patients., Methods: After assessment by acne patients ( n  = 715) on how clear and relevant the items in the prototype questionnaire were, a group of experts on acne and QoL performed discussions on items inclusion, which resulted in a series of 21 items. Then another group of acne patients ( n  = 1502) filled in the new version of the instrument. A factor analysis was conducted on the 21-item version., Results: Three-factor model with 19 items indicated a satisfactory fit. The three dimensions were called: Socioemotional; Symptoms; Stigma and Suicidal thoughts., Limitations: Included patients and experts may not fully represent acne patients and health care professionals worldwide., Conclusion: A final 19-item version of the Quality of Life Relevance-Acne was developed., Competing Interests: None declared., (© 2024 by the American Academy of Dermatology, Inc. Published by Elsevier Inc.)

Many events, including the COVID-19 pandemic, have accelerated the implementation of teledermatology pathways within dermatology departments and across healthcare organizations. Quality of Life (QoL) assessment in dermatology is also a rapidly developing field with a gradual shift from theory to practice. The purpose of this paper organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and patient-oriented outcomes and the EADV TF on teledermatology is to present current knowledge about QoL assessment during the use of teledermatology approaches, including data on health-related (HR) QoL instruments used in teledermatology, comparison of influence of different treatment methods on HRQoL after face-to-face and teledermatology consultations and to make practical recommendations concerning the assessment of QoL in teledermatology. The EADV TFs made the following position statements: HRQoL assessment may be an important part in most of teledermatology activities; HRQoL assessment may be easily and effectively performed during teledermatology consultations. It is especially important to monitor HRQoL of patients with chronic skin diseases during lockdowns or in areas where it is difficult to reach a hospital for face-to-face consultation; regular assessment of HRQoL of patients with skin diseases during teledermatology consultations may help to monitor therapy efficacy and visualize individual patient's needs; we recommend the use of the DLQI in teledermatology, including the use of the DLQI app which is available in seven languages; it is important to develop apps for dermatology-specific HRQoL instruments for use in children (for example the CDLQI and InToDermQoL) and for disease-specific instruments., (© 2023 European Academy of Dermatology and Venereology.)

Background: The Infants and Toddlers Dermatology Quality of Life (InToDermQoL) is the dermatology-specific proxy health-related quality of life (HRQoL) instrument for children from birth to 4 years. The aim of the present study was to confirm the responsiveness and establish minimal clinically important difference (MCID) for the InToDermQoL., Methods: Parents of children with skin diseases were asked to fill in the InToDermQoL at the initial visit (T1) and subsequent consultation (T2). We hypothesized that correlations between change scores of the InToDermQoL and change scores of global assessment of clinical severity by dermatologists and by patients' parents should be above 0.3. The receiver operating characteristic (ROC) curves method was also used for confirmation of responsiveness and determination of MCIDs of the InToDermQoL. The area under the ROC curve (AUC) was used as an indicator of responsiveness., Results: Results of 442 patients were included. Correlations between change scores of age-specific versions of the InToDermQoL and change scores of global assessment of clinical severity by dermatologists and by patients' parents were above 0.3 (0.46-0.74). AUCs for age-specific versions of the InToDermQoL were acceptable (above 0.7) or excellent (above 0.8). Estimated MCIDs for the InToDermQoL were as follows: 3 points of total score change for 0-11 months, 5 for 1-2 years and 3 or 4 for 3-4 years version. Estimated MCIDs for the InToDermQoL version for 1-2-year-old children was higher than MCIDs for the 3-4-year-old version despite the higher number of items in the latter. Therefore a MCID of 5 was recommended for both these versions., Conclusions: Responsiveness for all age-specific versions of the InToDermQoL questionnaire was confirmed. MCIDs for the InToDermQoL are proposed as follows: 3-point change of the total score for age version 0-11 months and 5-point for the age versions 1-2 years and 3-4 years., (© 2023. The Author(s).)

The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient-Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa (ARHS) do not recommend the use of any generic instrument as a single method of Health Related (HR) QoL assessment in rosacea, except when comparing quimp (quality of life impairment) in rosacea patients with that in other non-dermatologic skin diseases and/or healthy controls. The EADV TFs on QoL and Patient-Oriented Outcomes and ARHS recommend the use of the dermatology-specific HRQoL instrument the Dermatology Life Quality Index (DLQI) and the rosacea-specific HRQoL instrument RosaQoL in rosacea patients. The DLQI minimal clinically important difference may be used as a marker of clinical efficacy of the treatment and DLQI score banding of 0 or 1 corresponding to no effect on patients' HRQoL could be an important treatment goal. This information may be added to consensuses and guidelines for rosacea., (© 2023 European Academy of Dermatology and Venereology.)

Members of the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life (QoL) and Patient Oriented Outcomes reviewed the instruments available for health-related (HR) QoL assessment in vitiligo and together with external vitiligo experts (including representatives of the EADV Vitiligo Task Force) have made practical recommendations concerning the assessment of QoL in vitiligo patients. The Dermatology Life Quality Index (DLQI) was the most frequently used HRQoL instrument, making comparison of results between different countries possible. Several vitiligo-specific instruments were identified. The vitiligo Impact Scale (VIS) is an extensively validated vitiligo-specific HRQoL instrument with proposed minimal important change and clinical interpretation for VIS-22 scores. VIS-22 was developed for use in India, where there are some specific cultural beliefs concerning vitiligo. The EADV Task Force on QoL and Patient Oriented Outcomes recommends use of the DLQI and the Children's Dermatology Life Quality Index (CDLQI) as dermatology-specific instruments in vitiligo. There is a strong need for a valid (including cross-cultural validation) vitiligo-specific instrument that can be either a new instrument or the improvement of existing instruments. This validation must include the proof of responsiveness., (© 2022 European Academy of Dermatology and Venereology.)

Background: Health-related quality of life (HRQoL) assessment in patients with acne is recommended by several national guidelines. There are several acne-specific HRQoL instruments., Objectives: Participants of the European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on QoL and Patient Oriented Outcomes (PO) and Acne, Rosacea, and Hidradenitis Suppurativa (ARHS) agreed to scrutinize aspects of existing acne-specific HRQoL instruments for their relevance in international study., Methods: Consensus agreement on items related to QoL was reached after an independent assessment by seven experts from the EADV TFs on QoL and PO, and a list of 97 items was prepared and proposed to a group of acne patients. In order to have data from patients to check if any important topics were overseen, another group of acne patients from participating countries was asked to list how acne influenced different aspects of their lives., Results: Based on results obtained from 601 acne patients from nine countries, most of the items and topics showed low relevance for acne patients especially during the previous month or shorter time periods. Based on percentage of relevance and factor analysis, short (6 items) and long (45 items) lists of the most relevant topics were formed., Conclusion: Most of the items and topics from the initial list showed low relevance for acne patients. None of the identified acne-specific HRQoL instruments contain all the items that were deemed most relevant to acne patients. For this reason, participating members of the EADV TFs on QoL and PO, and ARHs are in the process of developing a new acne-specific HRQoL instrument., (© 2022 S. Karger AG, Basel.)

Background: The Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire is the first dermatology-specific proxy health related QoL instrument for children from birth to 4 years. Score meaning bands and the sensitivity to successful therapeutic intervention are important to interpret the clinical meaning of an instrument., Objective: The aim of the present study was to check the sensitivity to successful therapeutic intervention and establish score bands of the InToDermQoL questionnaire., Methods: Parents or grandparents of 424 children with skin diseases from Spain, Malta, Croatia, Romania, Greece, and Ukraine filled in national language versions of the InToDermQoL questionnaire. Disease severity of children with atopic dermatitis was assessed by SCORAD (Scoring atopic dermatitis). Cohen's d was used to assess the responsiveness of the instrument., Results: The mean total InToDermQoL scores significantly decreased after treatment. Severity grading of the SCORAD scores gave stratification of the InToDermQoL severity grades based on 95% confidence intervals. Scores below a calculated minimal important difference of 2 corresponded to no effect on patient's health related QoL., Limitations: Score banding may be slightly different across patient population and study context., Conclusion: All 3 age-specific versions of the InToDermQoL questionnaire showed sensitivity to treatment. Score bands for the InToDermQoL questionnaire have been established., Competing Interests: None disclosed., (© 2022 Published by Elsevier Inc on behalf of the American Academy of Dermatology, Inc.)

Core outcome sets (COSs) are an agreed standardized collection of outcomes that should be measured and reported in all clinical trials for a specific clinical condition. Tsekhe aim of our position paper by the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life and Patient Oriented Outcomes was to identify the challenges and Patient Oriented Outcomes advantages in the development of COSs within dermatological QoL research. Twelve EADV Task Force multidisciplinary team members presented a total of 101 items (51 advantages and 50 disadvantages). All participants considered that COS are beneficial for comparison between different studies, treatments, dermatological diseases, geographical location and ethnicities. In conclusion, the EADV Task Force on Quality of Life and Patient Oriented Outcomes has recognized the primacy of advantages of COS and deliberated that the disadvantages in COS are related to development process and use of COS., (© 2021 European Academy of Dermatology and Venereology.)

New treatment options may lead to an increased interest in using reliable and sensitive instruments to assess health-related quality of life in people with alopecia areata (AA). The purpose of this paper is to present current knowledge about quality of life assessment in AA. The dermatology-specific Dermatology Life Quality Index (DLQI) was the most widely reported health-related quality of life instrument used in AA. Three AA-specific (Alopecia Areata Symptom Impact Scale, Alopecia Areata Quality of Life Index and Alopecia Areata Patients' Quality of Life) and three hair disease-specific instruments (Hairdex, Scalpdex and 'hair-specific Skindex-29') were identified with a range of content and validation characteristics: there is little evidence yet of the actual use of these measures in AA. Scalpdex is the best-validated hair disease-specific instrument. Further extensive validation is needed for all of the AA-specific instruments. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes recommends the use of the dermatology-specific DLQI questionnaire, hair disease-specific Scalpdex and the alopecia areata-specific instruments the Alopecia Areata Symptom Impact Scale or Alopecia Areata Quality of Life Index, despite the limited experience of their use. We hope that new treatment methods will be able to improve both clinical signs and health-related quality of life in patients with AA. In order to assess the outcomes of trials on these new treatment methods, it would be helpful when further development and validation of AA-specific instruments is being encouraged and also conducted., (© 2021 European Academy of Dermatology and Venereology.)

The pharmaceutical approach to skin disease has been hugely successful, but despite effective drugs being available and used, there are still vast numbers of people who continue to have some level of persisting skin disease and continue to experience quality of life (QoL) impairment. So the question that needs to be answered, while we await further advances in our drug-based armamentarium, is how can we improve patients' QoL, beyond drugs? A working group was formed from members of the EADV Task Force on QoL and Patient Oriented Outcomes. Participants were asked to suggest all the ways in which they considered patients' QoL may be improved beyond medicines. Four groups of management approaches that may improve QoL in dermatology were identified: interventions within the dermatology service (hospitalization, multidisciplinary teams, patch testing and establishing relevant allergens and education), external services (corrective make-up, climatotherapy and balneotherapy), psychological (psychological intervention, cognitive therapy, hypnosis), lifestyle (lifestyle behavioural changes, religion and spirituality and music). The ultimate aim of therapy is to eradicate a disease in an individual and return the person's life to normal. But until the day comes when this has been achieved for every skin disease and for every patient there will be a need to support and assist many patients in additional non-pharmaceutical ways. These 'adjuvant' approaches receive too little attention while dermatologists and researchers strive for better pharmacological therapy. The different ways in which patients may benefit have been reviewed in our paper, but the reality is that most have a very poor evidence base. The research challenges that we have to meet are to identify those approaches that might be of value and to provide evidence for their optimal use. In the meantime, clinicians should consider the use of these approaches where QoL remains impaired despite optimal use of standard therapy., (© 2020 European Academy of Dermatology and Venereology.)

The European Academy of Dermatology and Venereology (EADV) has started the 'Healthy Skin @ Work' campaign aimed to raise awareness among the public and EU authorities on the frequency and impact of occupational skin diseases (OSDs). The EADV Task Forces (TFs) on Quality of Life and Patient Oriented Outcomes (QoL/PO) and on OSD present their mutual position statement on QoL assessment in OSDs. The EADV TFs recommend the use of the DLQI as a dermatology-specific instrument and SF-36 as a generic instrument in health-related (HR) QoL studies on OSDs. The OSD-specific questionnaire, LIOD, is not recommended for general use in its present form because of its three months recall period. The EADV TFs discourage the use of non-validated and of non-validated modifications of previously validated HRQoL instruments. The EADV TFs wish to encourage research into: the HRQoL impact of OSDs other than occupational contact dermatitis and hand eczema; comparisons between the effects of different treatments and other interventions on HRQoL in OSDs; and into the HRQoL impairment of patients with OSDs from different countries, and with different provoking factors, to predict if the results of successful therapeutic and educational interventions may be generalized across countries and between occupations., (© 2020 European Academy of Dermatology and Venereology.)

The pandemic of COVID-19 is a global challenge for health care, and dermatologists are not standing apart from trying to meet this challenge. The European Academy of Dermatology and Venereology (EADV) has collected recommendations from its Task Forces (TFs) related to COVID-19. The Journal of the EADV has established a COVID-19 Special Forum giving free access to related articles. The psychosocial effects of the pandemic, an increase in contact dermatitis and several other skin diseases because of stress, disinfectants and protective equipment use, especially in healthcare workers, the temporary limited access to dermatologic care, the dilemma whether or not to pause immunosuppressive therapy, and, finally, the occurrence of skin lesions in patients infected by COVID-19 all contribute to significant quality of life (QoL) impairment. Here, we present detailed recommendations of the EADV TF on QoL and patient-oriented outcomes on how to improve QoL in dermatologic patients during the COVID-19 pandemic for several different groups of patients and for the general population., (© 2020 European Academy of Dermatology and Venereology.)

This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on Quality of Life (QoL) and Patient-Oriented Outcomes and the EADV TF on acne, rosacea and hidradenitis suppurativa (ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on HS-specific health-related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommendations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Dermatology Life Quality Index (DLQI). There is a lack of high-quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. One double-blind randomized placebo-controlled trial on infliximab with low number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo group. Well-designed clinical studies in HS patients to compare different treatment methods, including surgical methods and assessing long-term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present able to recommend existing HS-specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the dermatology-specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, validation and use of other HS-specific, dermatology-specific and generic instruments but such use should be based on the principles presented in the previous publications of the EADV TF on QoL and Patient-Oriented Outcomes., (© 2019 European Academy of Dermatology and Venereology.)

Background: The first dermatology-specific proxy health-related quality of life (HRQoL) instrument for children 0-4 years old with skin diseases, the Infants and Toddlers Dermatology Quality of Life (InToDermQoL), was recently developed. In order to avoid the problem of cross-cultural inequivalence focus groups work and pilot tests were organized simultaneously in all national centres of the project. The InToDermQoL showed good comprehensibility, clarity and acceptance., Objective: To validate the InToDermQoL questionnaire during international field tests., Methods: Internal consistency, test-retest reliability, convergent and discriminant validity of the InToDermQoL questionnaire were checked during international field tests., Results: Parents of 473 children with skin diseases filled in the national language versions of the InToDermQoL questionnaire. All three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, showed high internal consistency (Cronbach's α 0.90-0.93), good test-retest reliability (correlation coefficients > 0.9), significant correlations with the most widely used atopic dermatitis-specific proxy instrument, the Infants Dermatitis Quality of Life Index (correlation coefficients 0.68-0.79). The InToDermQoL versions for children <3 years old well correlated with the atopic dermatis severity measure Scoring of Atopic Dermatitis (correlation coefficients 0.66 and 0.86 for 10 and 12 items versions, respectively). The InToDermQoL questionnaire discriminated well among different diagnoses and disease severity levels., Conclusion: Our field tests confirmed internal consistency, test-retest reliability, convergent and discriminant validity of the InToDermQoL questionnaire. Development and validation of the InToDermQoL questionnaire make it possible to assess dermatology-specific aspects of HRQoL in youngest children with skin diseases. There are many reasons to assess HRQoL in dermatologic clinical practice, and we hope that our new instrument will be used internationally in paediatric dermatology for research and practical needs., (© 2019 European Academy of Dermatology and Venereology.)

The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient Oriented Outcomes, Melanoma and Non-Melanoma Skin Cancer (NMSC) present a review of the literature and position statement on health-related (HR) QoL assessment in skin cancer patients. A literature search was carried out to identify publications since 1980 that included information about the impact of SC on QoL. Generic, dermatology-specific, cancer-specific, SC-specific, facial SC-specific, NMSC-specific, basal cell carcinoma-specific and melanoma-specific QoL questionnaires have been used to assess HRQoL in SC patients. HRQoL was assessed in the context of creation and validation of the HRQoL instruments, clinical trials, comparison of QoL in SC and other cancers, other diseases or controls, HRQoL assessment after treatment, comorbidities, behaviour modification, predictors of QoL and survival, supportive care needs, coping strategies and fear of cancer recurrence. The most widely used instruments for HRQoL assessment in SC patients are the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30), the Functional Assessment of Cancer Therapy-Melanoma (FACT-M), Skin Cancer Index (SCI), Short Form 36 Item Health Survey (SF-36) and the Dermatology Life Quality Index (DLQI). The TFs recommend the use of the cancer-specific EORTC QLQ-C30, especially in late stages of disease, and the melanoma-specific FACT-M and SC-specific SCI questionnaires. These instruments have been well validated and used in several studies. Other HRQoL instruments, also with good basic validation, are not currently recommended because the experience of their use is too limited. Dermatology-specific HRQoL instruments can be used to assess the impact of skin-related problems in SC. The TFs encourage further studies to validate HRQoL instruments for use in different stages of SC, in order to allow more detailed practical recommendations on HRQoL assessment in SC., (© 2019 European Academy of Dermatology and Venereology.)

Background: Until now, there was no validated dermatology-specific health-related quality of life (HRQoL) instrument to be used in youngest patients., Objective: To create dermatology-specific proxy instrument for HRQoL assessment in children from birth to 4 years., Methods: International focus groups, item selection and pilot tests were utilized. In order to avoid the problem of cross-cultural inequivalence, focus group work and pilot tests were planned simultaneously in all national centres of the project. Comprehensibility, clarity, acceptance and internal consistency of new instrument were checked., Results: The title 'Infants and Toddlers Dermatology Quality of Life' was chosen for our new instrument with the proposed acronym 'InToDermQoL'. Focus group work was completed in seven national centres (Croatia, Germany, Greece, Malta, Poland, Romania and Ukraine). A total of 170 families of children with different skin diseases were interviewed, and a pilot version of the instrument was created. Centres from France, Denmark and Spain have joined the project at this stage. Parents of 125 children with skin diseases filled in the pilot versions of the instrument. Good comprehensibility, clarity, acceptance and internal consistency of the InToDermQoL were confirmed. The pilot test results showed that the InToDermQoL questionnaire well differentiates severity-dependent differences. It was also checked and confirmed during the pilot test that no significant information was missed in the questionnaire. Three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, were approved for field tests., Conclusion: The pilot test results showed that the InToDermQoL questionnaire has good comprehensibility, clarity, acceptance and internal consistency and well differentiates severity-dependent differences. Further validation of the InToDermQoL during international field test will be performed., (© 2018 European Academy of Dermatology and Venereology.)

According to results of a recent literature search performed by the European Academy of Dermatology and Venereology (EADV) Task Forces (TF) on Quality of Life and Patient Oriented Outcomes (QoL and PO) and Acne, Rosacea and Hidradenitis Suppurativa (ARHS), most of the publications where health-related (HR) QoL of acne patients was studied were clinical trials. Members of the EADV TF on QoL and PO decided to detect which acne treatment has the best influence on HRQoL of acne patients. A new literature search was organized to find publications on acne treatment where the HRQoL of patients was assessed as an outcome measure. From 186 papers with HRQoL assessment, 37 papers were included for further analysis. Our results revealed that oral isotretinoin had the best influence on HRQoL of acne patients. Several other treatment methods also showed good effects on the HRQoL of acne patients. Oral isotretinoin and norethindrone acetate/ethinyl estradiol, topical clindamycin phosphate/benzoyl peroxide and adapalene/benzoyl peroxide showed significantly better effect on HRQoL than placebo. There is limited number of the high-quality studies on acne treatment where HRQoL was assessed. Dermatology-specific and acne-specific instruments showed much better sensitivity to successful therapeutic intervention than generic HRQoL instruments. The most frequently used HRQoL instrument was the Dermatology Life Quality Index questionnaire., (© 2018 European Academy of Dermatology and Venereology.)

Acne causes profound negative psychological and social effects on the quality of life (QoL) of patients. The European Dermatology Forum S3-Guideline for the Treatment of Acne recommended adopting a QoL measure as an integral part of acne management. Because of constantly growing interest in health-related QoL assessment in acne and because of the high impact of acne on patients' lives, the European Academy of Dermatology and Venereology Task Force on QoL and Patient Oriented Outcomes and the Task Force on Acne, Rosacea and Hidradenitis Suppurativa have documented the QoL instruments that have been used in acne patients, with information on validation, purposes of their usage, description of common limitations and mistakes in their usage and overall recommendations., (© 2017 European Academy of Dermatology and Venereology.)

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents' Index QoL Atopic Dermatitis, PiQoL-AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB-BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments., (© 2017 European Academy of Dermatology and Venereology.)

There is a need for researchers to have easy reference to the wide spectrum of different types of quality of life (QoL) instruments that can be used in atopic dermatitis (AD). Previous reviews on QoL in AD do not cover the full spectrum of QoL measures used in studies on AD. This study, on behalf of the European Academy of Dermatology and Venereology (EADV) Task Force on QoL, contains information on instruments available for health-related QoL and family QoL assessment in AD including information on validation, experience of QoL assessment in AD for different purposes, peculiarities of QoL assessment in different age groups, expert analysis of available instruments including data on limitations of their use and recommendations of the Task Force., (© 2016 European Academy of Dermatology and Venereology.)

The aim of this study was to describe the many ways in which quality of life (QoL) measurement may potentially be advantageous in routine clinical dermatology practice. Thirteen members of the EADV Task Force on Quality of Life, eight dermatologists, three health psychologists, one epidemiologist and one pharmacoepidemiologist, independently listed all of the ways they thought this may be advantageous. A total of 108 different ways of using QoL information in clinical practice were suggested (median per participant = 8, range = 4-15), and were classified into 20 descriptive groups. These were sorted into the following five categories: inform clinical decisions, clinician-patient communication, awareness of skin disease burden, informing the consultation and clinical service administration. The wide range of potential benefits identified may not only encourage clinicians to use these measures but also highlights many areas requiring evidence to establish the true value of routine use of QoL measures., (© 2016 European Academy of Dermatology and Venereology.)

Background: The purpose of the study was to evaluate the possible role of stress before the onset/extension/recurrence of psoriasis., Patients and Method: One hundred and sixty-nine outpatients with psoriasis and 169 age and gender matched controls were enrolled. The design was a case-control study (controls had skin diseases with low psychosomatic component). Stressful life events were evaluated using Holmes and Rahe's Social Readjustment Rating Scale., Results: In the psoriatic group, there was a female predominance (66%) and a median age 47.55 years (SD = 20.32). In all, 10.65% of patients had family history of psoriasis. More than 54% of cases experienced at least one stressful event (47.36% for onset, 63.51% for recurrence/extension), compared with 19.52% of controls (chi(2) = 42.71, P < 0.0001). The odds ratio was 4.92. There was a significant difference in the mean number of stressful events between patients and controls (P < 0.0001). Women with psoriasis vulgaris and men with guttate psoriasis seemed to be more sensitive to stressful events. We divided the events described by Holmes and Rahe into three categories: family, personal, and job/financial problems. Family matters were mentioned by 42.7% of psoriatic patients, statistically significant compared with controls (P < 0.0001). In 35% of psoriatic cases, "the stressful event" was represented by the illness/death of someone dear. Both "personal" (25.6%; P = 0.02) and "job/financial problems" (31.6%; P < 0.0001) were significantly different compared with controls., Conclusions: Stressful events could be highly related to psoriasis (especially in recurrences/extensions). Problems related to family are the most often involved with counseling being suggested.

Purpose: To evaluate the possible role of stress before the onset/extension of lichen planus., Patients and Method: Forty-six outpatients with lichen planus were enrolled. The design was a case-control study (controls had skin diseases with low psychosomatic component). Stressful situations were evaluated using Holmes and Rahe's social readjustment rating scale., Results: Lichen planus had an incidence of 0.36% among dermatological conditions. In the lichen planus group, there was a female predominance (76%) and a median age around 50 years. More than 67% of cases experienced at least one stressful event, compared with 21% of controls (chi(2) = 17.58, P < 0.001). The odds ratio was 7.44. There was a borderline significant difference in the mean number of stressful events between lichen planus patients and controls (P = 0.06). We divided the situations described by Holmes and Rahe into three categories: family, personal, and job or financial problems. The presence of major life events was significant different in patients and controls (P = 0.005). Family matters were described by 43.6% of lichen planus patients, statistically significant compared with controls (P = 0.002). In almost 25% of cases of lichen planus, 'the stressful event' was represented by the illness or death of someone dear. 'Personal problems' seemed to be important compared with controls (P = 0.04), exams representing 25% of these matters. There was no difference between the patients and controls regarding the importance of job or financial changes., Conclusion: Stressful situations, especially related to family, may have a role in the onset and extension of lichen planus lesions.

Objective: To study the involvement of stress before the onset/development of alopecia areata and vitiligo., Patients and Method: Forty-five outpatients with alopecia areata and 32 outpatients with vitiligo were enrolled. The design was a case-control study (controls had skin diseases unrelated to stress). Stressful events were evaluated using Holmes and Rahe's social readjustment rating scale., Results: Mean age was around 30 years in both conditions. More than 65% of cases (both alopecia areata and vitiligo) experienced stressful events compared to 22% of controls. The odds ratio was 7.75 for alopecia areata and 6.81 for vitiligo. There was a significant difference in the mean number of stressful events between alopecia areata patients and controls (P = 0.005), and also a significant difference in the number of stressful events between men (P = 0.05) and women (P = 0.001) across these two groups. In the vitiligo group there was a significant difference in the mean number of stressful events between patients and controls only in women (P = 0.02). A potential stressful situation occurred more often in both patient groups. Alopecia areata patients described family problems in 45.6% of patients (especially women), which was statistically significant when compared to controls (P = 0.0004). Personal problems were reported by 35.7% of alopecia areata patients (P = 0.04 compared to controls). Vitiligo patients mentioned personal problems in 47% of cases (one-third were related to exams) and 31% of cases were related to job/financial problems. Again, this was statistically significant when compared to controls (P = 0.0002)., Conclusions: Stress seems to play an important role in the onset and aggravation of both alopecia areata and vitiligo, mostly with one stressful event before disease onset.