Quality of life assessment in core outcome sets:: a position statement of the EADV Task Force on Quality of Life and Patient Oriented Outcomes.

Health and self-regulatio

Initial validation of the epidermolysis bullosa-specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire

Children with epidermolysis bullosa (EB) experienced the highest quality of life impact among several skin conditions and have problems which had not been reported by parents of children with other skin diseases. The EB-specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire was recently developed to measure the impact of disease-specific aspects in children from birth to the age of 4 years. The aim of this study was initial validation of the InToDermQoL-EB questionnaire. Parents of 44 children with EB from seven countries completed the InToDermQoL-EB questionnaire. Cronbach''s alpha was.86, .89 and.91 for three age-specific versions. Differences between severity levels were all significant except for that between moderate and severe level in the version for 3- to 4-year-old children. All items of the three versions of the InToDermQoL-EB showed very high levels of relevance except “problems with defecation” in children younger than 1 year and “rejection by other children” in 3- to 4-year-old children. The three versions of the InToDermQoL-EB instrument showed good internal consistency and discriminated well between different severity levels. All InToDermQoL-EB items were confirmed as being of high relevance and the questionnaire may be used in practice and clinical trials

Initial validation of the epidermolysis bullosa-specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire

Children with epidermolysis bullosa (EB) experienced the highest quality of life impact among several skin conditions and have problems which had not been reported by parents of children with other skin diseases. The EB-specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire was recently developed to measure the impact of disease-specific aspects in children from birth to the age of 4 years. The aim of this study was initial validation of the InToDermQoL-EB questionnaire. Parents of 44 children with EB from seven countries completed the InToDermQoL-EB questionnaire. Cronbach's alpha was.86,.89 and.91 for three age-specific versions. Differences between severity levels were all significant except for that between moderate and severe level in the version for 3- to 4-year-old children. All items of the three versions of the InToDermQoL-EB showed very high levels of relevance except “problems with defecation” in children younger than 1 year and “rejection by other children” in 3- to 4-year-old children. The three versions of the InToDermQoL-EB instrument showed good internal consistency and discriminated well between different severity levels. All InToDermQoL-EB items were confirmed as being of high relevance and the questionnaire may be used in practice and clinical trials. © 2020 Wiley Periodicals LLC

Quimp (quality of life impairment):an addition to the quality of life lexicon

There has been a constant growth in the number of publications each year concerning "quality of life (QoL)" and "dermatology," since the publication of the Dermatology Life Quality Index in 1994. Numerous dermatology and disease-specific QoL instruments have since been created. Quality of life is frequently assessed in clinical trials, educational activities and epidemiologic studies. QoL assessment is included in many national guidelines in dermatology. QoL assessment scores, together with disease severity measures, are used as guideline criteria for the use of biologics in dermatology and other clinical fields in many countries, and even for treatment reimbursement decisions. QoL assessment in dermatology is considered of benefit for routine clinical use. The European Academy of Dermatology and Venereology Task Force on QoL and Patient Oriented Outcomes (PO) is actively working to facilitate appropriate use of This article is protected by copyright. All rights reserve

Validation of the dermatology-specific proxy instrument the Infants and Toddlers Dermatology Quality of Life

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 Venereolog

Creation and pilot test results of the dermatology-specific proxy instrument: the Infants and Toddlers Dermatology Quality of Life

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 Venereolog