{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T02:26:57Z","timestamp":1782959217684,"version":"3.54.5"},"reference-count":34,"publisher":"Oxford University Press (OUP)","issue":"7","license":[{"start":{"date-parts":[[2024,3,13]],"date-time":"2024-03-13T00:00:00Z","timestamp":1710288000000},"content-version":"vor","delay-in-days":1,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,7,3]]},"abstract":"<jats:title>Summary<\/jats:title>\n                  <jats:p>As neonatal mortality rates have decreased in esophageal atresia (EA), there is a growing focus on quality of life (QoL) in these children. No study from Africa has reported on this topic. This pilot study aimed to describe disease-specific QoL in EA children and its applicability as part of long-term follow-up in an academic facility in South Africa. Disease-specific QoL in children born with EA was assessed utilizing the EA-QoL questionnaire for children aged 2\u201317\u00a0years during a patient-encounter. The parent-report for children aged 2\u20137\u00a0years compromised 17 items categorized into three domains: eating, physical health and treatment, and social isolation\/stress. The 24-item EA-QL questionnaire for children aged 8\u201318 (child- and parent-report) explored four domains: eating, body perception, social relationships, and health and well-being. A total of 13 questionnaires for children aged 2\u20137\u00a0years were completed by five parents. A negative perceived impact on their child\u2019s eating was reported by 46\u201392% of parents, and less impact in the other two domains. A total of 27 questionnaires were completed by eight children aged 8\u201317\u00a0years and 10 parents. Similar percentages children and parents reported a negative impact in the eating, social relationships, and body perception domains. More than half reported a negative impact on the child\u2019s health and well-being. This study supports the concept that assessment of disease-specific QoL should play a vital role in the comprehensive follow-up approach for children born with EA. We identified that parents of younger children were more likely to report eating disorders, whereas parents of older children were more likely to report health difficulties with different perceptions when it came to the child\u2019s scar.<\/jats:p>","DOI":"10.1093\/dote\/doae016","type":"journal-article","created":{"date-parts":[[2024,2,19]],"date-time":"2024-02-19T08:44:34Z","timestamp":1708332274000},"source":"Crossref","is-referenced-by-count":1,"title":["Disease-specific quality of life as part of the long-term follow-up for children born with esophageal atresia in an academic unit in South Africa\u2014a pilot study"],"prefix":"10.1093","volume":"37","author":[{"given":"C","family":"de Vos","sequence":"first","affiliation":[{"name":"Division of Pediatric Surgery, Stellenbosch University and Tygerberg Hospital , Cape Town , South Africa"},{"name":"Department of Pediatrics and Child Health, Stellenbosch University and Tygerberg Hospital , Cape Town , South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M","family":"Dellenmark-Blom","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery, The Queen Silvia Children\u2019s Hospital , Gothenberg , Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"F M","family":"Sikwete","sequence":"additional","affiliation":[{"name":"Division of Pediatric Surgery, Stellenbosch University and Tygerberg Hospital , Cape Town , South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D","family":"Sidler","sequence":"additional","affiliation":[{"name":"Division of Medical Ethics and Law, Stellenbosch University , Cape Town , South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L","family":"van Wyk","sequence":"additional","affiliation":[{"name":"Department of Pediatrics and Child Health, Stellenbosch University and Tygerberg Hospital , Cape Town , South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"P","family":"Goussard","sequence":"additional","affiliation":[{"name":"Department of Pediatrics and Child Health, Stellenbosch University and Tygerberg Hospital , Cape Town , South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2024,3,12]]},"reference":[{"key":"2024070311355175700_ref1","volume-title":"Constitution of the World Health Organization","author":"WHO"},{"key":"2024070311355175700_ref2","doi-asserted-by":"crossref","first-page":"695","DOI":"10.1097\/MPG.0000000000003293","article-title":"Longitudinal health status and quality of life after esophageal atresia repair","volume":"73","author":"Ten Kate","year":"2021","journal-title":"J Pediatr Gastroenterol Nutr"},{"key":"2024070311355175700_ref3","doi-asserted-by":"crossref","first-page":"550","DOI":"10.1097\/MPG.0000000000001401","article-title":"ESPGHAN-NASPGHAN guidelines for the evaluation and treatment of gastrointestinal and nutritional complications in children with esophageal atresia-tracheoesophageal fistula","volume":"63","author":"Usha Krishnan","year":"2016","journal-title":"J Pediatr Gastroenterol Nutr"},{"key":"2024070311355175700_ref4","doi-asserted-by":"crossref","first-page":"735","DOI":"10.1038\/s41575-023-00789-w","article-title":"The international network on oesophageal atresia (INoEA) consensus guidelines on the transition of patients with oesophageal atresia-tracheoesophageal fistula","volume":"20","author":"Krishnan","year":"2023","journal-title":"Nat Rev Gastroenterol Hepatol"},{"key":"2024070311355175700_ref5","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1097\/MPG.0000000000002019","article-title":"The esophageal-atresia-quality-of-life questionnaires: feasibility, validity and reliability in Sweden and Germany","volume":"67","author":"Dellenmark-Blom","year":"2018","journal-title":"J Pediatr Gastroenterol Nutr"},{"key":"2024070311355175700_ref6","doi-asserted-by":"crossref","first-page":"640","DOI":"10.5152\/tjg.2021.201005","article-title":"Feasibility, reliability, and validity of the Turkish version of the esophageal-atresia-quality-of-life questionnaires to assess condition-specific quality of life in children and adolescents born with esophageal atresia","volume":"32","author":"Soyer","year":"2021","journal-title":"Turkish Journal of Gastroenterology"},{"key":"2024070311355175700_ref7","first-page":"9","article-title":"Psychometric performance of a condition-specific quality-of-life instrument for Dutch children born with esophageal atresia","volume":"9","author":"Ten Kate","year":"2022","journal-title":"Children (Basel)"},{"key":"2024070311355175700_ref8","doi-asserted-by":"crossref","first-page":"8047","DOI":"10.3390\/ijerph19138047","article-title":"Reliability and validity of the Polish version of the esophageal-atresia-quality-of-life questionnaires to assess condition-specific quality of life in children and adolescents born with esophageal atresia","volume":"19","author":"Rozensztrauch","year":"2022","journal-title":"Int J Environ Res Public Health"},{"key":"2024070311355175700_ref9","doi-asserted-by":"crossref","first-page":"14923","DOI":"10.3390\/ijerph192214923","article-title":"The Chinese Mandarin version of the esophageal-atresia-quality-of-life questionnaires for children and adolescents: evaluation of linguistic and content validity","volume":"19","author":"Li","year":"2022","journal-title":"Int J Environ Res Public Health"},{"key":"2024070311355175700_ref10","volume-title":"The first joint international EA-QOL initiative: preliminary findings from 14 countries evaluating condition-specific quality of life questionnaires for children with esophageal atresia","author":"Dellenmark-Blom","year":"2023"},{"key":"2024070311355175700_ref11","doi-asserted-by":"crossref","first-page":"563","DOI":"10.1016\/j.jpedsurg.2015.09.023","article-title":"Health-related quality of life experiences among children and adolescents born with esophageal atresia: development of a condition-specific questionnaire for pediatric patients","volume":"51","author":"Dellenmark-Blom","year":"2016","journal-title":"J Pediatr Surg"},{"key":"2024070311355175700_ref12","doi-asserted-by":"crossref","first-page":"94","DOI":"10.1111\/j.1524-4733.2005.04054.x","article-title":"Principals of good practice for the translation and cultural adaptation process for pateint-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation","volume":"8","author":"Wild","year":"2005","journal-title":"Value Health"},{"key":"2024070311355175700_ref13","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1055\/s-0040-1710389","article-title":"Health-related quality of life in patients after repair of esophageal atresia: a review of current literature","volume":"30","author":"Dellenmark-Blom","year":"2020","journal-title":"Eur J Pediatr Surg"},{"key":"2024070311355175700_ref14","doi-asserted-by":"crossref","first-page":"2433","DOI":"10.1007\/s11136-015-0975-x","article-title":"Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research","volume":"24","author":"Dellenmark-Blom","year":"2015","journal-title":"Qual Life Res"},{"key":"2024070311355175700_ref15","article-title":"Convention on the rights of the child | OHCHR","volume":"44\/25","author":"United Nations","year":"1989","journal-title":"General Assembly Resolution"},{"key":"2024070311355175700_ref16","doi-asserted-by":"crossref","first-page":"424","DOI":"10.1111\/cch.12324","article-title":"Children\u2019s experiences about a structured assessment of health-related quality of life during a patient encounter","volume":"42","author":"Petersson","year":"2016","journal-title":"Child Care Health Dev"},{"key":"2024070311355175700_ref17","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s13023-021-02153-0","article-title":"Childhood rare diseases and the UN convention on the rights of the child","volume":"16","author":"Matthews","year":"2021","journal-title":"Orphanet J Rare Dis"},{"key":"2024070311355175700_ref18","first-page":"437","volume-title":"Holcomb and Aschcrafts Pediatric Surgery","author":"Rothenberg","year":"2020","edition":"7th"},{"key":"2024070311355175700_ref19","doi-asserted-by":"crossref","first-page":"2473","DOI":"10.1016\/j.jpedsurg.2019.08.040","article-title":"Quality of life assessment in esophageal atresia patients: a systematic review focusing on long-gap esophageal atresia \u2606","volume":"54","author":"Tan Tanny","year":"2019","journal-title":"J Pediatr Surg"},{"key":"2024070311355175700_ref20","doi-asserted-by":"crossref","first-page":"511","DOI":"10.1016\/S0022-3468(98)90100-2","article-title":"Quality of life more than 20 years after repair of esophageal atresia","volume":"33","author":"Ure","year":"1998","journal-title":"J Pediatr Surg"},{"key":"2024070311355175700_ref21","doi-asserted-by":"crossref","first-page":"1253892","DOI":"10.3389\/fped.2023.1253892","article-title":"Establishment of a condition-specific quality-of-life questionnaire for children born with esophageal atresia aged 2\u20137 across 14 countries","volume":"11","author":"The International EA-QoL Group","year":"2023","journal-title":"Front Pediatr"},{"key":"2024070311355175700_ref22","doi-asserted-by":"crossref","first-page":"410","DOI":"10.1111\/dote.12062","article-title":"Feeding difficulties in children with esophageal atresia: treatment by a multidisciplinary team","volume":"26","author":"Ramsay","year":"2013","journal-title":"Dis Esophagus"},{"key":"2024070311355175700_ref23","doi-asserted-by":"crossref","first-page":"331","DOI":"10.3390\/children9030331","article-title":"Congenital esophageal atresia long-term follow-up-the pediatric surgeon\u2019s duty to focus on quality of life","volume":"9","author":"Ardenghi","year":"2022","journal-title":"Children"},{"key":"2024070311355175700_ref24","doi-asserted-by":"crossref","first-page":"1932","DOI":"10.1016\/j.jpedsurg.2020.12.024","article-title":"Patient-driven healthcare recommendations for adults with esophageal atresia and their families","volume":"56","author":"Ten Kate","year":"2021","journal-title":"J Pediatr Surg"},{"key":"2024070311355175700_ref25","doi-asserted-by":"crossref","first-page":"110474","DOI":"10.1016\/j.jpsychores.2021.110474","article-title":"A thematic analysis exploring the psychological well-being of adults born with esophageal atresia","volume":"145","author":"Rabone","year":"2021","journal-title":"J Psychosom Res"},{"key":"2024070311355175700_ref26","doi-asserted-by":"crossref","first-page":"976","DOI":"10.1001\/archsurg.140.10.976","article-title":"Quality of life in adult survivors of correction of esophageal atresia","volume":"140","author":"Deurloo","year":"2005","journal-title":"Arch Surg"},{"key":"2024070311355175700_ref27","doi-asserted-by":"crossref","first-page":"307","DOI":"10.1016\/j.jpedsurg.2004.10.014","article-title":"Health-related quality of life in adult patients with esophageal atresia\u2014a questionnaire study","volume":"40","author":"Koivusalo","year":"2005","journal-title":"J Pediatr Surg"},{"key":"2024070311355175700_ref28","doi-asserted-by":"crossref","first-page":"160","DOI":"10.12968\/bjon.2021.30.3.160","article-title":"Body dysmorphic disorder in children and young people","volume":"30","author":"Watson","year":"2021","journal-title":"Br J Nurs"},{"key":"2024070311355175700_ref29","doi-asserted-by":"crossref","first-page":"e3522","DOI":"10.1097\/GOX.0000000000003522","article-title":"Daily quality-of-life impact of scars: an interview-based foundational study of patient-reported themes","volume":"9","author":"Hsieh","year":"2021","journal-title":"Plast Reconstr Surg Glob Open"},{"key":"2024070311355175700_ref30","doi-asserted-by":"crossref","first-page":"330","DOI":"10.1186\/s12887-019-1701-6","article-title":"Agreement between mothers\u2019, fathers\u2019, and children\u2019s\u2019 ratings on health-related quality of life in children born with esophageal atresia\u2014a German cross-sectional study","volume":"19","author":"Witt","year":"2019","journal-title":"BMC Pediatr"},{"key":"2024070311355175700_ref31","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1186\/s13023-021-01748-x","article-title":"Parent\u2013child-agreement on health-related quality of life and its determinants in patients born with esophageal atresia: a Swedish\u2013German cross-sectional study","volume":"16","author":"Witt","year":"2021","journal-title":"Orphanet J Rare Dis"},{"key":"2024070311355175700_ref32","doi-asserted-by":"crossref","first-page":"365","DOI":"10.1111\/dote.12053","article-title":"Thoracotomy for repair of esophageal atresia: not as bad as they want you to think!","volume":"26","author":"Laberge","year":"2013","journal-title":"Dis Esophagus"},{"key":"2024070311355175700_ref33","doi-asserted-by":"crossref","first-page":"393","DOI":"10.1136\/archdischild-2015-310068","article-title":"Paediatric health-related quality of life: what is it and why should we measure it?","volume":"102","author":"Haverman","year":"2017","journal-title":"Arch Dis Child"},{"key":"2024070311355175700_ref34","doi-asserted-by":"crossref","first-page":"364","DOI":"10.3389\/fped.2020.00364","article-title":"Patient-reported outcome measures in routine pediatric clinical care: a systematic review","volume":"8","author":"Bele","year":"2020","journal-title":"Front Pediatr"}],"container-title":["Diseases of the Esophagus"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/dote\/article-pdf\/37\/7\/doae016\/58403295\/doae016.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/dote\/article-pdf\/37\/7\/doae016\/58403295\/doae016.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,3]],"date-time":"2024-07-03T07:38:55Z","timestamp":1719992335000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/dote\/article\/doi\/10.1093\/dote\/doae016\/7626919"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,3,12]]},"references-count":34,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2024,3,12]]},"published-print":{"date-parts":[[2024,7,3]]}},"URL":"https:\/\/doi.org\/10.1093\/dote\/doae016","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.3.rs-3316663\/v1","asserted-by":"object"}]},"ISSN":["1120-8694","1442-2050"],"issn-type":[{"value":"1120-8694","type":"print"},{"value":"1442-2050","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2024,7]]},"published":{"date-parts":[[2024,3,12]]},"article-number":"doae016"}}