{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,20]],"date-time":"2026-03-20T06:58:19Z","timestamp":1773989899929,"version":"3.50.1"},"reference-count":43,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2018,9,16]],"date-time":"2018-09-16T00:00:00Z","timestamp":1537056000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100001424","name":"American Liver Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001424","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2019,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age\u2010specific approaches are fundamental in understanding children's health\u2010related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross\u2010cultural understanding of condition\u2010specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA\u2010specific HRQoL questionnaire.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Eighteen standardized focus groups (FGs) with 51 families of EA children aged 2\u201317\u00a0years in Sweden (<jats:italic>n<\/jats:italic>\u00a0=\u00a030 families) and Germany (<jats:italic>n<\/jats:italic>\u00a0=\u00a021 families) were used to explore HRQoL experiences, which were content analyzed into HRQoL domains. The Swedish HRQoL domains were analyzed first and used as framework to evaluate HRQoL content reported in the German FGs. HRQoL experiences were then categorized as physical, social, and emotional HRQoL burden or resource.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>One thousand nine hundred eight HRQoL statements were recorded. All nine EA\u2010specific HRQoL domains identified in the Swedish FGs (eating, social relationships, general life issues, communication, body issues, bothersome symptoms, confidence, impact of medical treatment, and additional difficulties due to concomitant anomalies) were recognized in the FGs held in Germany, and no additional EA\u2010specific HRQoL domain was found. The HRQoL dimensions referenced physical burden (<jats:italic>n<\/jats:italic>\u00a0=\u00a0655, 34.5%), social burden (<jats:italic>n<\/jats:italic>\u00a0=\u00a0497, 26.0%), social resources (<jats:italic>n<\/jats:italic>\u00a0=\u00a0303, 15.9%), emotional burden (<jats:italic>n<\/jats:italic>\u00a0=\u00a0210, 11.0%), physical resources (<jats:italic>n<\/jats:italic>\u00a0=\u00a0158, 8.3%), and emotional resources (<jats:italic>n<\/jats:italic>\u00a0=\u00a085, 4.5%).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>This first international FG study to obtain the EA child and his or her parents' perspective on HRQoL suggests Swedish\u2010German qualitative comparability of the HRQoL domains and content validity for a cross\u2010cultural EA\u2010specific HRQoL questionnaire. EA children make positive and negative HRQoL experiences, but prominently related to physical and social burden, which underlines appropriate follow\u2010up care and future research.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12619","type":"journal-article","created":{"date-parts":[[2018,9,17]],"date-time":"2018-09-17T06:44:18Z","timestamp":1537166658000},"page":"79-88","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Health\u2010related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish\u2013German focus group study"],"prefix":"10.1111","volume":"45","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6143-7594","authenticated-orcid":false,"given":"Stefanie","family":"Witt","sequence":"first","affiliation":[{"name":"Department of Medical Psychology University Medical Center Hamburg\u2010Eppendorf  Hamburg 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University Hospital  Gothenburg Sweden"},{"name":"Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University The Queen Silvia Children's Hospital  Gothenburg Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linus","family":"J\u00f6nsson","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, Queen Silvia Children's Hospital Sahlgrenska University Hospital  Gothenburg Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vladimir","family":"Gatzinsky","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, Queen Silvia Children's Hospital Sahlgrenska University Hospital  Gothenburg Sweden"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John Eric","family":"Chaplin","sequence":"additional","affiliation":[{"name":"Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University The Queen Silvia Children's Hospital  Gothenburg 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