{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,24]],"date-time":"2026-07-24T10:43:58Z","timestamp":1784889838565,"version":"3.55.0"},"reference-count":82,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T00:00:00Z","timestamp":1720051200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T00:00:00Z","timestamp":1720051200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["ICA-CDRF-2018\u201304-ST2-042"],"award-info":[{"award-number":["ICA-CDRF-2018\u201304-ST2-042"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Introduction<\/jats:title>\n                <jats:p>Eating, drinking and swallowing difficulties are commonly reported morbidities for individuals born with OA\/TOF. This study aimed to determine the nature and prevalence of eating, drinking and oro-pharyngeal swallowing difficulties reported in this population.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Method<\/jats:title>\n                <jats:p>A systematic review and meta-proportional analysis were conducted (PROSPERO: CRD42020207263). MEDLINE, EMBASE, CINAHL, Pubmed, Scopus, Web of Science databases and grey literature were searched. Quantitative and qualitative data were extracted relating to swallow impairment, use of mealtime adaptations and eating and drinking-related quality of life. Quantitative data were summarised using narrative and meta-proportional analysis methods. Qualitative data were synthesised using a meta-aggregation approach. Where quantitative and qualitative data described the same phenomenon, a convergent segregated approach was used to synthesise data.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Sixty-five studies were included. Six oro-pharyngeal swallow characteristics were identified, and pooled prevalence calculated: aspiration (24%), laryngeal penetration (6%), oral stage dysfunction (11%), pharyngeal residue (13%), nasal regurgitation (7%), delayed swallow initiation (31%). Four patient-reported eating\/drinking difficulties were identified, and pooled prevalence calculated: difficulty swallowing solids (45%), difficulty swallowing liquids (6%), odynophagia (30%), coughing when eating (38%). Three patient-reported mealtime adaptations were identified, and pooled prevalence calculated: need for water when eating (49%), eating slowly (37%), modifying textures (28%). Mixed methods synthesis of psychosocial impacts identified 34% of parents experienced mealtime anxiety and 25% report challenging mealtime behaviours reflected in five qualitative themes: fear and trauma associated with eating and drinking, isolation and a lack of support, being aware and grateful, support to cope and loss.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Eating and drinking difficulties are common in adults and children with repaired OA\/TOF. Oro-pharyngeal swallowing difficulties may be more prevalent than previously reported. Eating, drinking and swallowing difficulties can impact on psychological well-being and quality of life, for the individual and parents\/family members. Long-term, multi-disciplinary follow-up is warranted.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13023-024-03259-x","type":"journal-article","created":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T15:02:35Z","timestamp":1720105355000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["The characteristics of eating, drinking and oro-pharyngeal swallowing difficulties associated with repaired oesophageal atresia\/tracheo-oesophageal fistula: a systematic review and meta-proportional analysis"],"prefix":"10.1186","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2170-6769","authenticated-orcid":false,"given":"Alexandra","family":"Stewart","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roganie","family":"Govender","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon","family":"Eaton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina H.","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paolo","family":"De Coppi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jo","family":"Wray","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,7,4]]},"reference":[{"issue":"1","key":"3259_CR1","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1038\/s41572-019-0077-0","volume":"5","author":"M van Lennep","year":"2019","unstructured":"van Lennep M, Singendonk MMJ, Dall\u2019Oglio L, Gottrand F, Krishnan U, Terheggen-Lagro SWJ, et al. Oesophageal atresia Nat Rev Dis Primers. 2019;5(1):26.","journal-title":"Oesophageal atresia Nat Rev Dis Primers"},{"key":"3259_CR2","doi-asserted-by":"publisher","first-page":"62","DOI":"10.3389\/fped.2017.00062","volume":"5","author":"T Kovesi","year":"2017","unstructured":"Kovesi T. Aspiration Risk and Respiratory Complications in Patients with Esophageal Atresia. Front Pediatr. 2017;5:62.","journal-title":"Front Pediatr"},{"key":"3259_CR3","doi-asserted-by":"publisher","first-page":"127","DOI":"10.3389\/fped.2017.00127","volume":"5","author":"L Mahoney","year":"2017","unstructured":"Mahoney L, Rosen R. Feeding Problems and Their Underlying Mechanisms in the Esophageal Atresia-Tracheoesophageal Fistula Patient. Front Pediatr. 2017;5:127.","journal-title":"Front Pediatr"},{"issue":"9","key":"3259_CR4","doi-asserted-by":"publisher","first-page":"1555","DOI":"10.1016\/j.jpedsurg.2020.09.010","volume":"56","author":"A Comella","year":"2021","unstructured":"Comella A, Tan Tanny SP, Hutson JM, Omari TI, Teague WJ, Nataraja RM, et al. Esophageal morbidity in patients following repair of esophageal atresia: A systematic review. J Pediatr Surg. 2021;56(9):1555\u201363.","journal-title":"J Pediatr Surg"},{"issue":"4","key":"3259_CR5","first-page":"837","volume":"19","author":"MA Lefton-Greif","year":"2008","unstructured":"Lefton-Greif MA. Pediatric dysphagia. Physical Medicine and Rehabilitation Clinics. 2008;19(4):837\u201351.","journal-title":"Physical Medicine and Rehabilitation Clinics"},{"issue":"4","key":"3259_CR6","doi-asserted-by":"publisher","first-page":"949","DOI":"10.1111\/scs.13070","volume":"37","author":"K Lamm","year":"2022","unstructured":"Lamm K, Kristensson Hallstrom I, Landgren K. Parents\u2019 experiences of living with a child with Paediatric Feeding Disorder: an interview study in Sweden. Scand J Caring Sci. 2022;37(4):949\u201358.","journal-title":"Scand J Caring Sci"},{"issue":"4","key":"3259_CR7","doi-asserted-by":"publisher","first-page":"285","DOI":"10.3233\/EFI-180221","volume":"34","author":"QN Hong","year":"2018","unstructured":"Hong QN, F\u00e0bregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, et al. The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Education for Information. 2018;34(4):285\u201391.","journal-title":"Education for Information"},{"key":"3259_CR8","doi-asserted-by":"publisher","first-page":"1","DOI":"10.18637\/jss.v049.i05","volume":"49","author":"BC Wallace","year":"2012","unstructured":"Wallace BC, Dahabreh IJ, Trikalinos TA, Lau J, Trow P, Schmid CH. Closing the gap between methodologists and end-users: R as a computational back-end. J Stat Softw. 2012;49:1\u201315.","journal-title":"J Stat Softw"},{"issue":"3","key":"3259_CR9","first-page":"179","volume":"13","author":"C Lockwood","year":"2015","unstructured":"Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. JBI Evidence Implementation. 2015;13(3):179\u201387.","journal-title":"JBI Evidence Implementation"},{"issue":"10","key":"3259_CR10","doi-asserted-by":"publisher","first-page":"2108","DOI":"10.11124\/JBISRIR-D-19-00169","volume":"18","author":"C Stern","year":"2020","unstructured":"Stern C, Lizarondo L, Carrier J, Godfrey C, Rieger K, Salmond S, et al. Methodological guidance for the conduct of mixed methods systematic reviews. JBI Evid Synth. 2020;18(10):2108\u201318.","journal-title":"JBI Evid Synth"},{"issue":"8","key":"3259_CR11","doi-asserted-by":"publisher","first-page":"1219","DOI":"10.1016\/S0022-3468(98)90154-3","volume":"33","author":"M Montgomery","year":"1998","unstructured":"Montgomery M, Witt H, Kuylenstierna R, Frenckner B. Swallowing disorders after esophageal atresia evaluated with videomanometry. J Pediatr Surg. 1998;33(8):1219\u201323.","journal-title":"J Pediatr Surg"},{"issue":"6","key":"3259_CR12","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1055\/s-0037-1599231","volume":"27","author":"S Serel Arslan","year":"2017","unstructured":"Serel Arslan S, Soyer T, Demir N, Yalcin S, Karaduman A, Karnak I, et al. Effect of Swallowing Rehabilitation Protocol on Swallowing Function in Patients with Esophageal Atresia and\/or Tracheoesophageal Fistula. Eur J Pediatr Surg. 2017;27(6):526\u201332.","journal-title":"Eur J Pediatr Surg"},{"issue":"1","key":"3259_CR13","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1007\/s00455-022-10461-1","volume":"38","author":"T Soyer","year":"2023","unstructured":"Soyer T, Arslan SS, Boybeyi O, Demir N, Tanyel FC. The Role of Oral Feeding Time and Sham Feeding on Oropharyngeal Swallowing Functions in Children with Esophageal Atresia. Dysphagia. 2023;38(1):247\u201352.","journal-title":"Dysphagia"},{"issue":"5","key":"3259_CR14","doi-asserted-by":"publisher","first-page":"507","DOI":"10.1258\/rsmacta.43.5.507","volume":"43","author":"M Hormann","year":"2002","unstructured":"Hormann M, Pokieser P, Scharitzer M, Pumberger W, Memarsadeghi M, Partik B, et al. Videofluoroscopy of deglutition in children after repair of esophageal atresia. Acta radiologica. 2002;43(5):507\u201310.","journal-title":"Acta radiologica."},{"issue":"9","key":"3259_CR15","doi-asserted-by":"publisher","first-page":"1227","DOI":"10.1007\/s00383-022-05169-0","volume":"38","author":"U Celtik","year":"2022","unstructured":"Celtik U, Eyigor S, Divarci E, Sezgin B, Dokumcu Z, Ozcan C, et al. Fiberoptic endoscopic evaluation of swallowing (FEES) study: the first report in children to evaluate the oropharyngeal dysphagia after esophageal atresia repair. Pediatr Surg Int. 2022;38(9):1227\u201333.","journal-title":"Pediatr Surg Int"},{"issue":"9","key":"3259_CR16","doi-asserted-by":"publisher","first-page":"1209","DOI":"10.1007\/s00431-016-2760-4","volume":"175","author":"CH Coppens","year":"2016","unstructured":"Coppens CH, van den Engel-Hoek L, Scharbatke H, de Groot SAF, Draaisma JMT. Dysphagia in children with repaired oesophageal atresia. Eur J Pediatr. 2016;175(9):1209\u201317.","journal-title":"Eur J Pediatr"},{"issue":"3","key":"3259_CR17","doi-asserted-by":"publisher","first-page":"288","DOI":"10.1097\/MPG.0000000000003697","volume":"76","author":"J Maybee","year":"2023","unstructured":"Maybee J, Deck J, Jensen E, Ruiz A, Kinder S, DeBoer E. Feeding and Swallowing Characteristics of Children With Esophageal Atresia and Tracheoesophageal Fistula. J Pediatr Gastroenterol Nutr. 2023;76(3):288\u201394.","journal-title":"J Pediatr Gastroenterol Nutr."},{"issue":"11","key":"3259_CR18","doi-asserted-by":"publisher","first-page":"1823","DOI":"10.1016\/j.jpedsurg.2015.07.002","volume":"50","author":"S Yalcin","year":"2015","unstructured":"Yalcin S, Demir N, Serel S, Soyer T, Tanyel FC. The evaluation of deglutition with videofluoroscopy after repair of esophageal atresia and\/or tracheoesophageal fistula. J Pediatr Surg. 2015;50(11):1823\u20137.","journal-title":"J Pediatr Surg"},{"issue":"8","key":"3259_CR19","doi-asserted-by":"publisher","first-page":"1551","DOI":"10.1016\/j.jpedsurg.2018.08.041","volume":"54","author":"SW Fung","year":"2019","unstructured":"Fung SW, Lapidus-Krol E, Chiang M, Fallon EM, Haliburton B, Propst EJ, et al. Vocal cord dysfunction following esophageal atresia and tracheoesophageal fistula (EA\/TEF) repair. J Pediatr Surg. 2019;54(8):1551\u20136.","journal-title":"J Pediatr Surg"},{"issue":"2","key":"3259_CR20","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1002\/lary.24804","volume":"125","author":"JC Fraga","year":"2015","unstructured":"Fraga JC, Adil EA, Kacprowicz A, Skinner ML, Jennings R, Lillehei C, et al. The association between laryngeal cleft and tracheoesophageal fistula: myth or reality? Laryngoscope. 2015;125(2):469\u201374.","journal-title":"Laryngoscope"},{"issue":"5","key":"3259_CR21","doi-asserted-by":"publisher","first-page":"659","DOI":"10.1016\/j.amjsurg.2008.02.001","volume":"195","author":"NR Golonka","year":"2008","unstructured":"Golonka NR, Hayashi AH. Early \u201csham\u201d feeding of neonates promotes oral feeding after delayed primary repair of major congenital esophageal anomalies. Am J Surg. 2008;195(5):659\u201362.","journal-title":"Am J Surg"},{"issue":"9","key":"3259_CR22","doi-asserted-by":"publisher","first-page":"1655","DOI":"10.1016\/j.jpedsurg.2017.12.025","volume":"53","author":"KJ Baxter","year":"2018","unstructured":"Baxter KJ, Baxter LM, Landry AM, Wulkan ML, Bhatia AM. Structural airway abnormalities contribute to dysphagia in children with esophageal atresia and tracheoesophageal fistula. J Pediatr Surg. 2018;53(9):1655\u20139.","journal-title":"J Pediatr Surg"},{"issue":"3","key":"3259_CR23","doi-asserted-by":"publisher","first-page":"doac060","DOI":"10.1093\/dote\/doac060","volume":"36","author":"JL Yasuda","year":"2023","unstructured":"Yasuda JL, Taslitsky GN, Staffa SJ, Ngo PD, Meisner J, Mohammed S, et al. Predictors of enteral tube dependence in pediatric esophageal atresia. Dis Esophagus. 2023;36(3):doac060.","journal-title":"Dis Esophagus"},{"issue":"1","key":"3259_CR24","first-page":"152","volume":"32","author":"N Demir","year":"2017","unstructured":"Demir N, Soyer T, Serel Arslan S, Yalcin S, Karaduman AA, Tanyel FC. Alterations in hypolaryngeal elevation after esophageal anastomosis: A possible mechanism for airway aspiration. Dysphagia. 2017;32(1):152.","journal-title":"Dysphagia"},{"key":"3259_CR25","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1007\/BF00417897","volume":"11","author":"JC Rosenbek","year":"1996","unstructured":"Rosenbek JC, Robbins JA, Roecker EB, Coyle JL, Wood JL. A penetration-aspiration scale. Dysphagia. 1996;11:93\u20138.","journal-title":"Dysphagia"},{"issue":"10","key":"3259_CR26","doi-asserted-by":"publisher","first-page":"1576","DOI":"10.1016\/j.jpedsurg.2017.02.018","volume":"52","author":"T Soyer","year":"2017","unstructured":"Soyer T, Yalcin S, Arslan SS, Demir N, Tanyel FC. Pediatric Eating Assessment Tool-10 as an indicator to predict aspiration in children with esophageal atresia. J Pediatr Surg. 2017;52(10):1576\u20139.","journal-title":"J Pediatr Surg"},{"issue":"12","key":"3259_CR27","doi-asserted-by":"publisher","first-page":"2133","DOI":"10.1016\/j.jpedsurg.2021.07.014","volume":"56","author":"AW Harrington","year":"2021","unstructured":"Harrington AW, Riebold J, Hernandez K, Staffa SJ, Svetanoff WJ, Zurakowski D, et al. Nutrition delivery and growth outcomes in infants with long-gap esophageal atresia who undergo the Foker process. J Pediatr Surg. 2021;56(12):2133\u20139.","journal-title":"J Pediatr Surg"},{"issue":"1","key":"3259_CR28","first-page":"114","volume":"170","author":"K Thompson","year":"2021","unstructured":"Thompson K, Zendejas B, Svetanoff WJ, Labow B, Taghinia A, Ganor O, et al. Evolution, lessons learned, and contemporary outcomes of esophageal replacement with jejunum for children. Surgery (United States). 2021;170(1):114\u201325.","journal-title":"Surgery (United States)"},{"issue":"10","key":"3259_CR29","doi-asserted-by":"publisher","first-page":"1745","DOI":"10.1016\/j.jpedsurg.2021.05.001","volume":"56","author":"ES van Tuyll van Serooskerken","year":"2021","unstructured":"van Tuyll van Serooskerken ES, Lindeboom MYA, Verweij JW, van der Zee DC, Tytgat SHAJ. Childhood outcome after correction of long-gap esophageal atresia by thoracoscopic external traction technique. J Pediatr Surg. 2021;56(10):1745\u201351.","journal-title":"J Pediatr Surg"},{"issue":"4","key":"3259_CR30","doi-asserted-by":"publisher","first-page":"747","DOI":"10.1016\/j.jpedsurg.2022.07.023","volume":"59","author":"A Bourg","year":"2023","unstructured":"Bourg A, Gottrand F, Parmentier B, Thomas J, Lehn A, Piolat C, et al. Outcome of long gap esophageal atresia at 6 years: A prospective case control cohort study. Journal of pediatric surgery. 2023;59(4):747\u201355.","journal-title":"Journal of pediatric surgery."},{"issue":"1","key":"3259_CR31","doi-asserted-by":"publisher","first-page":"178","DOI":"10.1159\/000499445","volume":"13","author":"A Barni","year":"2019","unstructured":"Barni A, Zecchillo D, Uberti S, Ratti S. Osteopathic Manipulative Treatment in a Paediatric Patient with Oesophageal Atresia and Tracheo-Oesophageal Fistula. Case Rep Gastroenterol. 2019;13(1):178\u201384.","journal-title":"Case Rep Gastroenterol"},{"key":"3259_CR32","doi-asserted-by":"publisher","first-page":"130","DOI":"10.1016\/j.jpeds.2019.11.034","volume":"218","author":"K Birketvedt","year":"2020","unstructured":"Birketvedt K, Mikkelsen A, Klingen LL, Henriksen C, Helland IB, Emblem R. Nutritional Status in Adolescents with Esophageal Atresia. J Pediatr. 2020;218:130\u20137.","journal-title":"J Pediatr"},{"key":"3259_CR33","doi-asserted-by":"crossref","unstructured":"Capitanio M, Guana R, Garofalo S, Scottoni F, Cortese MG, Marchetti C, et al. Quality of life and long-term results in patients operated on for Esophageal Atresia. Minerva pediatrics. 2021 Dec 03.","DOI":"10.23736\/S2724-5276.21.06597-6"},{"issue":"8","key":"3259_CR34","doi-asserted-by":"publisher","first-page":"1421","DOI":"10.1016\/j.jpedsurg.2022.10.003","volume":"58","author":"A Mikkelsen","year":"2023","unstructured":"Mikkelsen A, Moinichen UI, Reims HM, Grzyb K, Aabakken L, Morkrid L, et al. Clinical variables as indicative factors for endoscopy in adolescents with esophageal atresia. J Pediatr Surg. 2023;58(8):1421\u20139.","journal-title":"J Pediatr Surg"},{"issue":"2","key":"3259_CR35","doi-asserted-by":"publisher","first-page":"94","DOI":"10.1055\/s-0030-1270454","volume":"21","author":"V Gatzinsky","year":"2011","unstructured":"Gatzinsky V, Jonsson L, Johansson C, Gothberg G, Sillen U, Friberg LG. Dysphagia in adults operated on for esophageal atresia\u2013use of a symptom score to evaluate correlated factors. Eur J Pediatr Surg. 2011;21(2):94\u20138.","journal-title":"Eur J Pediatr Surg."},{"issue":"SUPPL 1","key":"3259_CR36","first-page":"209","volume":"72","author":"I Traini","year":"2021","unstructured":"Traini I, Yee Chan S, Menzies J, Hughes J, Tamarah K, Coffey MJ, et al. Food for thought: Dietary intake, dysphagia and growth in children with repaired oesophageal atresia. J Pediatr Gastroenterol Nutr. 2021;72(SUPPL 1):209.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"3","key":"3259_CR37","doi-asserted-by":"publisher","first-page":"224","DOI":"10.1111\/dote.12178","volume":"28","author":"R Baird","year":"2015","unstructured":"Baird R, Levesque D, Birnbaum R, Ramsay M. A pilot investigation of feeding problems in children with esophageal atresia. Dis Esophagus. 2015;28(3):224\u20138.","journal-title":"Dis Esophagus"},{"issue":"11","key":"3259_CR38","doi-asserted-by":"publisher","first-page":"1791","DOI":"10.1111\/jpc.14840","volume":"56","author":"J Menzies","year":"2020","unstructured":"Menzies J, Hughes J. Parental feeding concerns of infants and young children with oesophageal atresia. J Paediatr Child Health. 2020;56(11):1791\u20134.","journal-title":"J Paediatr Child Health"},{"issue":"1","key":"3259_CR39","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1136\/archdischild-2020-320609","volume":"107","author":"A Pham","year":"2022","unstructured":"Pham A, Ecochard-Dugelay E, Bonnard A, Le Roux E, Gelas T, Rousseau V, et al. Feeding disorders in children with oesophageal atresia: a cross-sectional study. Arch Dis Child. 2022;107(1):52\u20138.","journal-title":"Arch Dis Child"},{"issue":"1","key":"3259_CR40","doi-asserted-by":"publisher","first-page":"96","DOI":"10.1055\/s-0039-1693729","volume":"30","author":"M Dellenmark-Blom","year":"2020","unstructured":"Dellenmark-Blom M, Quitmann J, Dingemann J, Witt S, Ure BM, Bullinger M, et al. Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study. Eur J Pediatr Surg. 2020;30(1):96\u2013103.","journal-title":"Eur J Pediatr Surg"},{"issue":"1","key":"3259_CR41","doi-asserted-by":"publisher","first-page":"207","DOI":"10.1186\/s13023-022-02361-2","volume":"17","author":"M Dellenmark-Blom","year":"2022","unstructured":"Dellenmark-Blom M, Abrahamsson K, Dingemann J, Witt S, Dingemann C, Jonsson L, et al. Factors of family impact in a Swedish-German cohort of children born with esophageal atresia. Orphanet J Rare Dis. 2022;17(1):207.","journal-title":"Orphanet J Rare Dis"},{"issue":"6","key":"3259_CR42","doi-asserted-by":"publisher","first-page":"534","DOI":"10.1055\/s-0037-1608930","volume":"28","author":"S Serel Arslan","year":"2018","unstructured":"Serel Arslan S, Demir N, Karaduman AA, Tanyel FC, Soyer T. Chewing Function in Children with Repaired Esophageal Atresia-Tracheoesophageal Fistula. Eur J Pediatr Surg. 2018;28(6):534\u20138.","journal-title":"Eur J Pediatr Surg"},{"issue":"3","key":"3259_CR43","doi-asserted-by":"publisher","first-page":"319","DOI":"10.1097\/MPG.0000000000000801","volume":"61","author":"Y Tan","year":"2015","unstructured":"Tan Y, Zhang J, Zhou J, Duan T, Liu D. Endoscopic Incision for the Treatment of Refractory Esophageal Anastomotic Strictures in Children. J Pediatr Gastroenterol Nutr. 2015;61(3):319\u201322.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"3","key":"3259_CR44","doi-asserted-by":"publisher","first-page":"438","DOI":"10.1007\/s00455-019-10046-5","volume":"35","author":"S Serel Arslan","year":"2020","unstructured":"Serel Arslan S, Demir N, Karaduman AA, Tanyel FC, Soyer T. Assessment of the Concerns of Caregivers of Children with Repaired Esophageal Atresia-Tracheoesophageal Fistula Related to Feeding-Swallowing Difficulties. Dysphagia. 2020;35(3):438\u201342.","journal-title":"Dysphagia"},{"issue":"1","key":"3259_CR45","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1055\/s-0040-1716880","volume":"31","author":"SO Ax","year":"2021","unstructured":"Ax SO, Abrahamsson K, Gatzinsky V, Jonsson L, Dellenmark-Blom M. Parent-Reported Feeding Difficulties among Children Born with Esophageal Atresia: Prevalence and Early Risk Factors. Eur J Pediatr Surg. 2021;31(1):69\u201375.","journal-title":"Eur J Pediatr Surg"},{"key":"3259_CR46","doi-asserted-by":"crossref","unstructured":"Dellenmark-Blom M, Chaplin JE, Quitmann JH, J\u00f6nsson L, Gatzinsky V, Dingemann J, Abrahamsson K. The prevalence and role of coping strategies in the nutritional intake of children born with esophageal atresia: a condition-specific approach.\u00a0Dis Esophagus. 2019;32(7):doz004.","DOI":"10.1093\/dote\/doz004"},{"issue":"1","key":"3259_CR47","doi-asserted-by":"publisher","first-page":"275","DOI":"10.1007\/s00431-022-04677-4","volume":"182","author":"S Bergmann","year":"2023","unstructured":"Bergmann S, Ritz LA, Widenmann-Grolig A, Jechalke S, von Schweinitz D, Hubertus J, et al. Swallowing-related quality of life in children with oesophageal atresia: a national cohort study. Eur J Pediatr. 2023;182(1):275\u201383.","journal-title":"Eur J Pediatr"},{"issue":"2","key":"3259_CR48","doi-asserted-by":"publisher","first-page":"305","DOI":"10.1097\/SLA.0000000000001978","volume":"266","author":"W Gibreel","year":"2017","unstructured":"Gibreel W, Zendejas B, Antiel RM, Fasen G, Moir CR, Zarroug AE. Swallowing Dysfunction and Quality of Life in Adults With Surgically Corrected Esophageal Atresia\/Tracheoesophageal Fistula as Infants: Forty Years of Follow-up. Ann Surg. 2017;266(2):305\u201310.","journal-title":"Ann Surg"},{"issue":"2","key":"3259_CR49","doi-asserted-by":"publisher","first-page":"91","DOI":"10.1155\/2015\/787069","volume":"29","author":"V Huynh Trudeau","year":"2015","unstructured":"Huynh Trudeau V, Maynard S, Terzic T, Soucy G, Bouin M. Dysphagia among adult patients who underwent surgery for esophageal atresia at birth. Can J Gastroenterol Hepatol. 2015;29(2):91\u20134.","journal-title":"Can J Gastroenterol Hepatol"},{"issue":"6","key":"3259_CR50","doi-asserted-by":"publisher","first-page":"609","DOI":"10.1097\/MPG.0b013e3182868773","volume":"56","author":"C Lemoine","year":"2013","unstructured":"Lemoine C, Aspirot A, Le Henaff G, Piloquet H, Levesque D, Faure C. Characterization of esophageal motility following esophageal atresia repair using high-resolution esophageal manometry. J Pediatr Gastroenterol Nutr. 2013;56(6):609\u201314.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"4","key":"3259_CR51","doi-asserted-by":"publisher","first-page":"443","DOI":"10.1097\/MPG.0b013e3181638ca2","volume":"47","author":"T Frohlich","year":"2008","unstructured":"Frohlich T, Otto S, Weber P, Pilic D, Schmidt-Choudhury A, Wenzl TG, et al. Combined esophageal multichannel intraluminal impedance and pH monitoring after repair of esophageal atresia. J Pediatr Gastroenterol Nutr. 2008;47(4):443\u20139.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"4","key":"3259_CR52","doi-asserted-by":"publisher","first-page":"635","DOI":"10.1016\/j.jpedsurg.2019.04.028","volume":"55","author":"SS Arslan","year":"2020","unstructured":"Arslan SS, Demir N, Karaduman AA, Tanyel FC, Soyer T. The functional chewing training for chewing dysfunction in children with repaired EA-TEF. J Pediatr Surg. 2020;55(4):635\u20138.","journal-title":"J Pediatr Surg"},{"issue":"4","key":"3259_CR53","doi-asserted-by":"publisher","first-page":"206","DOI":"10.1055\/s-2008-1066206","volume":"5","author":"BM Ure","year":"1995","unstructured":"Ure BM, Slany E, Eypasch EP, Gharib M, Holschneider AM, Troidl H. Long-term functional results and quality of life after colon interposition for long-gap oesophageal atresia. Eur J Pediatr Surg. 1995;5(4):206\u201310.","journal-title":"Eur J Pediatr Surg"},{"issue":"8","key":"3259_CR54","doi-asserted-by":"publisher","first-page":"1227","DOI":"10.1016\/j.jpedsurg.2005.05.003","volume":"40","author":"JA Deurloo","year":"2005","unstructured":"Deurloo JA, Ekkelkamp S, Taminiau JAJM, Kneepkens CMF, ten Kate FWJ, Bartelsman JFWM, et al. Esophagitis and Barrett esophagus after correction of esophageal atresia. J Pediatr Surg. 2005;40(8):1227\u201331.","journal-title":"J Pediatr Surg"},{"issue":"1","key":"3259_CR55","doi-asserted-by":"publisher","first-page":"doz102","DOI":"10.1093\/dote\/doz102","volume":"33","author":"F Bevilacqua","year":"2020","unstructured":"Bevilacqua F, Ragni B, Conforti A, Gentile S, Zaccara A, Dotta A, et al. Fixed the gap, solved the problem? Eating skills in esophageal atresia patients at 3 years. Dis Esophagus. 2020;33(1):doz102.","journal-title":"Dis Esophagus"},{"issue":"1","key":"3259_CR56","doi-asserted-by":"publisher","first-page":"84","DOI":"10.1136\/adc.65.1.84","volume":"65","author":"JW Puntis","year":"1990","unstructured":"Puntis JW, Ritson DG, Holden CE, Buick RG. Growth and feeding problems after repair of oesophageal atresia. Arch Dis Child. 1990;65(1):84\u20138.","journal-title":"Arch Dis Child"},{"issue":"5","key":"3259_CR57","doi-asserted-by":"publisher","first-page":"686","DOI":"10.1097\/01.sla.0000094303.07910.05","volume":"238","author":"JA Deurloo","year":"2003","unstructured":"Deurloo JA, Ekkelkamp S, Bartelsman JFWM, Ten Kate FJW, Schoorl M, Heij HA, et al. Gastroesophageal reflux: prevalence in adults older than 28 years after correction of esophageal atresia. Ann Surg. 2003;238(5):686\u20139.","journal-title":"Ann Surg"},{"issue":"1","key":"3259_CR58","first-page":"9","volume":"58","author":"M Cimador","year":"2006","unstructured":"Cimador M, Carta M, Di Pace MR, Natale G, Castiglione A, Sergio M, et al. Primary repair in esophageal atresia. The results of long term follow-up. Minerva pediatrica. 2006;58(1):9\u201313.","journal-title":"Minerva pediatrica"},{"issue":"6","key":"3259_CR59","doi-asserted-by":"publisher","first-page":"702","DOI":"10.1016\/j.cgh.2007.03.012","volume":"5","author":"ACF Taylor","year":"2007","unstructured":"Taylor ACF, Breen KJ, Auldist A, Catto-Smith A, Clarnette T, Crameri J, et al. Gastroesophageal reflux and related pathology in adults who were born with esophageal atresia: a long-term follow-up study. Clinical gastroenterology and hepatology\u202f: the official clinical practice journal of the American Gastroenterological Association. 2007;5(6):702\u20136.","journal-title":"Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association"},{"issue":"SUPPL. 2","key":"3259_CR60","first-page":"E133","volume":"50","author":"C Legrand","year":"2010","unstructured":"Legrand C, Michaud L, Neut D, Sfeir R, Thumerelle C, Bonnevalle M, et al. Long term outcome of children with esophageal atresia. J Pediatr Gastroenterol Nutr. 2010;50(SUPPL. 2):E133\u20134.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"3","key":"3259_CR61","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1097\/MPG.0000000000000961","volume":"62","author":"N Presse","year":"2016","unstructured":"Presse N, Taillefer J, Maynard S, Bouin M. Insufficient Body Weight of Adults Born With Esophageal Atresia. J Pediatr Gastroenterol Nutr. 2016;62(3):469\u201373.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"1","key":"3259_CR62","doi-asserted-by":"publisher","first-page":"239","DOI":"10.1186\/s13023-022-02381-y","volume":"17","author":"M Dellenmark-Blom","year":"2022","unstructured":"Dellenmark-Blom M, Orno Ax S, Ost E, Svensson JF, Kassa A-M, Jonsson L, et al. Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia: a nationwide Swedish study. Orphanet J Rare Dis. 2022;17(1):239.","journal-title":"Orphanet J Rare Dis"},{"issue":"4","key":"3259_CR63","doi-asserted-by":"publisher","first-page":"e100","DOI":"10.1097\/MPG.0000000000001436","volume":"64","author":"J Menzies","year":"2017","unstructured":"Menzies J, Hughes J, Leach S, Belessis Y, Krishnan U. Prevalence of Malnutrition and Feeding Difficulties in Children With Esophageal Atresia. J Pediatr Gastroenterol Nutr. 2017;64(4):e100\u20135.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"2","key":"3259_CR64","doi-asserted-by":"publisher","first-page":"73","DOI":"10.1055\/s-2008-1063406","volume":"2","author":"S Cavallaro","year":"1992","unstructured":"Cavallaro S, Pineschi A, Freni G, Cortese MG, Bardini T. Feeding troubles following delayed primary repair of esophageal atresia. Eur J Pediatr Surg. 1992;2(2):73\u20137.","journal-title":"Eur J Pediatr Surg."},{"issue":"10","key":"3259_CR65","doi-asserted-by":"publisher","first-page":"2825","DOI":"10.1111\/j.1572-0241.1999.1423_c.x","volume":"94","author":"E Krug","year":"1999","unstructured":"Krug E, Bergmeijer JH, Dees J, de Krijger R, Mooi WJ, Hazebroek FW. Gastroesophageal reflux and Barrett\u2019s esophagus in adults born with esophageal atresia. Am J Gastroenterol. 1999;94(10):2825\u20138.","journal-title":"Am J Gastroenterol"},{"issue":"7","key":"3259_CR66","doi-asserted-by":"publisher","first-page":"doz004","DOI":"10.1093\/dote\/doz004","volume":"32","author":"M Dellenmark-Blom","year":"2019","unstructured":"Dellenmark-Blom M, Chaplin JE, Quitmann JH, Jonsson L, Gatzinsky V, Dingemann J, et al. The prevalence and role of coping strategies in the nutritional intake of children born with esophageal atresia: a condition-specific approach. Dis Esophagus. 2019;32(7):doz004.","journal-title":"Dis Esophagus"},{"issue":"6","key":"3259_CR67","doi-asserted-by":"publisher","first-page":"498","DOI":"10.1080\/08039480500360856","volume":"59","author":"A Faugli","year":"2005","unstructured":"Faugli A, Aamodt G, Bjornland K, Emblem R, Diseth TH. Assessment of early mother-child relation in infants with oesophageal atresia. Nord J Psychiatry. 2005;59(6):498\u2013503.","journal-title":"Nord J Psychiatry"},{"issue":"jns, 8607529","key":"3259_CR68","first-page":"e9-e15","volume":"67","author":"V Wallace","year":"2022","unstructured":"Wallace V, Honkalampi K, Korhonen M. Fear, isolation and the importance of support: A qualitative study of parents\u2019 experiences of feeding a child born with esophageal atresia. J Pediatr Nurs. 2022;67(jns, 8607529):e9\u201315.","journal-title":"J Pediatr Nurs"},{"issue":"12","key":"3259_CR69","doi-asserted-by":"publisher","first-page":"792","DOI":"10.1016\/j.jpedsurg.2022.08.013","volume":"57","author":"A Stewart","year":"2022","unstructured":"Stewart A, Smith CH, Govender R, Eaton S, De Coppi P, Wray J. Parents\u2019 experiences of feeding children born with oesophageal atresia\/tracheo-oesophageal fistula. J Pediatr Surg. 2022;57(12):792\u20139.","journal-title":"J Pediatr Surg"},{"key":"3259_CR70","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpsychores.2021.110474","volume":"145","author":"C Rabone","year":"2021","unstructured":"Rabone C, Wallace V. A thematic analysis exploring the psychological well-being of adults born with esophageal atresia. J Psychosom Res. 2021;145: 110474.","journal-title":"J Psychosom Res"},{"issue":"11","key":"3259_CR71","doi-asserted-by":"publisher","first-page":"2241","DOI":"10.1016\/j.jpedsurg.2013.03.051","volume":"48","author":"NJ Hall","year":"2013","unstructured":"Hall NJ, Wyatt M, Curry JI, Kiely EM. A standardised investigative strategy prior to revisional oesophageal surgery in children: High incidence of unexpected findings. J Pediatr Surg. 2013;48(11):2241\u20136.","journal-title":"J Pediatr Surg"},{"issue":"2","key":"3259_CR72","doi-asserted-by":"publisher","first-page":"281","DOI":"10.1007\/s00455-019-10023-y","volume":"35","author":"TI Omari","year":"2020","unstructured":"Omari TI, Ciucci M, Gozdzikowska K, Hernandez E, Hutcheson K, Jones C, et al. High-Resolution Pharyngeal Manometry and Impedance: Protocols and Metrics-Recommendations of a High-Resolution Pharyngeal Manometry International Working Group. Dysphagia. 2020;35(2):281\u201395.","journal-title":"Dysphagia"},{"issue":"Supplement 2","key":"3259_CR73","first-page":"421","volume":"66","author":"L Ferris","year":"2018","unstructured":"Ferris L, King S, McCall L, Rommel N, Doeltgen S, Scholten I, et al. Piecemeal deglutition and the implications for pediatric pressure impedance swallow assessments. J Pediatr Gastroenterol Nutr. 2018;66(Supplement 2):421.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"3","key":"3259_CR74","doi-asserted-by":"publisher","first-page":"1244","DOI":"10.1044\/2021_AJSLP-20-00337","volume":"31","author":"A Miles","year":"2022","unstructured":"Miles A, Dharmarathna I, Fuller L, Jardine M, Allen J. Developing a protocol for quantitative analysis of liquid swallowing in children. Am J Speech Lang Pathol. 2022;31(3):1244\u201363.","journal-title":"Am J Speech Lang Pathol"},{"issue":"4","key":"3259_CR75","doi-asserted-by":"publisher","first-page":"392","DOI":"10.1007\/s00455-008-9185-9","volume":"23","author":"B Martin-Harris","year":"2008","unstructured":"Martin-Harris B, Brodsky MB, Michel Y, Castell DO, Schleicher M, Sandidge J, et al. MBS measurement tool for swallow impairment\u2013MBSImp: establishing a standard. Dysphagia. 2008;23(4):392\u2013405.","journal-title":"Dysphagia"},{"issue":"3","key":"3259_CR76","doi-asserted-by":"publisher","first-page":"372","DOI":"10.1097\/MPG.0000000000002987","volume":"72","author":"DR Duncan","year":"2021","unstructured":"Duncan DR, DiFilippo C, Kane M, Lurie M, McSweeney ME, Rosen RL. Overlapping Symptoms of Gastroesophageal Reflux and Aspiration Highlight the Limitations of Validated Questionnaires. J Pediatr Gastroenterol Nutr. 2021;72(3):372\u20137.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"7","key":"3259_CR77","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1093\/dote\/dox017","volume":"30","author":"M Dellenmark-Blom","year":"2017","unstructured":"Dellenmark-Blom M, Abrahamsson K, Quitmann J, Sommer R, Witt S, Dingemann J, et al. Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia. Dis Esophagus. 2017;30(7):1\u20139.","journal-title":"Dis Esophagus"},{"key":"3259_CR78","first-page":"97","volume":"17","author":"CA McHorney","year":"2002","unstructured":"McHorney CA, Robbins J, Lomax K, Rosenbek JC, Chignell K, Kramer AE, et al. The SWAL\u2013QOL and SWAL\u2013CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity Dysphagia. 2002;17:97\u2013114.","journal-title":"Documentation of reliability and validity Dysphagia"},{"issue":"7","key":"3259_CR79","first-page":"870","volume":"127","author":"AY Chen","year":"2001","unstructured":"Chen AY, Frankowski R, Bishop-Leone J, Hebert T, Leyk S, Lewin J, et al. The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: the MD Anderson dysphagia inventory. Archives of Otolaryngology-Head & Neck Surgery. 2001;127(7):870\u20136.","journal-title":"Archives of Otolaryngology-Head & Neck Surgery"},{"issue":"6","key":"3259_CR80","doi-asserted-by":"publisher","first-page":"doac088","DOI":"10.1093\/dote\/doac088","volume":"36","author":"CA Ten Kate","year":"2023","unstructured":"Ten Kate CA, Teunissen NM, van Rosmalen J, Kamphuis LS, van Wijk MP, Joosten M, et al. Development and validation of a condition-specific quality of life instrument for adults with esophageal atresia: the SQEA questionnaire. Dis Esophagus. 2023;36(6):doac088.","journal-title":"Dis Esophagus"},{"issue":"1","key":"3259_CR81","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1177\/1367493520905381","volume":"25","author":"AH Silverman","year":"2021","unstructured":"Silverman AH, Erato G, Goday P. The relationship between chronic paediatric feeding disorders and caregiver stress. J Child Health Care. 2021;25(1):69\u201380.","journal-title":"J Child Health Care"},{"issue":"1","key":"3259_CR82","doi-asserted-by":"publisher","first-page":"124","DOI":"10.1097\/MPG.0000000000002188","volume":"68","author":"PS Goday","year":"2019","unstructured":"Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, et al. Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework. J Pediatr Gastroenterol Nutr. 2019;68(1):124\u20139.","journal-title":"J Pediatr Gastroenterol Nutr"}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-024-03259-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13023-024-03259-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-024-03259-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T15:05:02Z","timestamp":1720105502000},"score":1,"resource":{"primary":{"URL":"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-024-03259-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7,4]]},"references-count":82,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["3259"],"URL":"https:\/\/doi.org\/10.1186\/s13023-024-03259-x","relation":{},"ISSN":["1750-1172"],"issn-type":[{"value":"1750-1172","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,7,4]]},"assertion":[{"value":"9 January 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"16 June 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 July 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"253"}}