{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T23:56:44Z","timestamp":1780358204617,"version":"3.54.1"},"reference-count":20,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2018,12,4]],"date-time":"2018-12-04T00:00:00Z","timestamp":1543881600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"EADV","award":["2015-011"],"award-info":[{"award-number":["2015-011"]}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acad Dermatol Venereol"],"published-print":{"date-parts":[[2019,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Epidermolysis bullosa (<jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>) may have severe impact on different aspects of patients\u2019 life. Until now there was no <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\u2010specific quality of life (QoL) instrument for young children.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>To create <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>\u2010specific proxy module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Focus groups with parents of children with <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> were organized. Parents of <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> children were interviewed by the project staff with regard to their perception of QoL issues of the skin disease of their children.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Focus groups with parents of <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> children in Ukraine and Romania were organized. Parents represented eight boys and 12 girls from 3\u00a0months to 4\u00a0years old with different <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> types and disease severity. Based on the analysis of focus groups\u2019 results, two <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> specific items that were not mentioned by parents of children with other skin diseases and therefore were not included to the dermatology\u2010specific InToDermQoL questionnaire were developed: \u2018problems with defecation\u2019 and \u2018problems with shoes\u2019. These problems were mentioned by 55% of all parents and 11.76% of parents that represented <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> children older than 1\u00a0year, respectively.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>We want to invite other centres and <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> related organizations to join our project starting from the pilot test. There are many different reasons why QoL measurement is important in dermatology clinical practice and our goal is practical use of the instrument in children with <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jdv.15337","type":"journal-article","created":{"date-parts":[[2018,11,13]],"date-time":"2018-11-13T13:57:37Z","timestamp":1542117457000},"page":"612-617","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":33,"title":["Epidermolysis bullosa\u2010specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire"],"prefix":"10.1111","volume":"33","author":[{"given":"P.V.","family":"Chernyshov","sequence":"first","affiliation":[{"name":"Department of Dermatology and Venereology National Medical University Kiev 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