@article{dellenmark-blom_experiences_2025,
	title = {Experiences of symptom burden among young children born with esophageal atresia–tracheoesophageal fistula: a {US} focus group study},
	volume = {20},
	issn = {1750-1172},
	shorttitle = {Experiences of symptom burden among young children born with esophageal atresia–tracheoesophageal fistula},
	url = {https://doi.org/10.1186/s13023-025-03939-2},
	doi = {10.1186/s13023-025-03939-2},
	abstract = {Children born with esophageal atresia–tracheoesophageal fistula (EA–TEF) can suffer from aerodigestive morbidity that impairs their quality of life and can persist into adulthood. Ameliorating their symptom burden requires a thorough understanding of the symptom experiences that children have early in life. We aimed to explore parents’ experiences of their children’s aerodigestive symptom burden during the first years of life after being born with EA–TEF. This exploration also aimed to help determine whether a disease-specific measurement of symptom burden is needed.},
	language = {en},
	number = {1},
	urldate = {2025-09-02},
	journal = {Orphanet Journal of Rare Diseases},
	author = {Dellenmark-Blom, Michaela and Bennett, John and Micalizzi, Rosella and Cole, Lianne and Woods, Kaylee and Cardoni, Lauren and Frain, Leah and Mohamed, Abdimajid and Yasuda, Jessica and Ngo, Peter and Widenmann, Anke and Slater, Graham and Zendejas, Benjamin},
	month = aug,
	year = {2025},
	keywords = {Esophageal atresia, Patient-reported outcome, Rare disease, Symptom burden, Tracheobronchomalacia, Tracheomalacia},
	pages = {438},
}

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Ameliorating their symptom burden requires a thorough understanding of the symptom experiences that children have early in life. We aimed to explore parents’ experiences of their children’s aerodigestive symptom burden during the first years of life after being born with EA–TEF. This exploration also aimed to help determine whether a disease-specific measurement of symptom burden is needed.","language":"en","number":"1","urldate":"2025-09-02","journal":"Orphanet Journal of Rare Diseases","author":[{"propositions":[],"lastnames":["Dellenmark-Blom"],"firstnames":["Michaela"],"suffixes":[]},{"propositions":[],"lastnames":["Bennett"],"firstnames":["John"],"suffixes":[]},{"propositions":[],"lastnames":["Micalizzi"],"firstnames":["Rosella"],"suffixes":[]},{"propositions":[],"lastnames":["Cole"],"firstnames":["Lianne"],"suffixes":[]},{"propositions":[],"lastnames":["Woods"],"firstnames":["Kaylee"],"suffixes":[]},{"propositions":[],"lastnames":["Cardoni"],"firstnames":["Lauren"],"suffixes":[]},{"propositions":[],"lastnames":["Frain"],"firstnames":["Leah"],"suffixes":[]},{"propositions":[],"lastnames":["Mohamed"],"firstnames":["Abdimajid"],"suffixes":[]},{"propositions":[],"lastnames":["Yasuda"],"firstnames":["Jessica"],"suffixes":[]},{"propositions":[],"lastnames":["Ngo"],"firstnames":["Peter"],"suffixes":[]},{"propositions":[],"lastnames":["Widenmann"],"firstnames":["Anke"],"suffixes":[]},{"propositions":[],"lastnames":["Slater"],"firstnames":["Graham"],"suffixes":[]},{"propositions":[],"lastnames":["Zendejas"],"firstnames":["Benjamin"],"suffixes":[]}],"month":"August","year":"2025","keywords":"Esophageal atresia, Patient-reported outcome, Rare disease, Symptom burden, Tracheobronchomalacia, Tracheomalacia","pages":"438","bibtex":"@article{dellenmark-blom_experiences_2025,\n\ttitle = {Experiences of symptom burden among young children born with esophageal atresia–tracheoesophageal fistula: a {US} focus group study},\n\tvolume = {20},\n\tissn = {1750-1172},\n\tshorttitle = {Experiences of symptom burden among young children born with esophageal atresia–tracheoesophageal fistula},\n\turl = {https://doi.org/10.1186/s13023-025-03939-2},\n\tdoi = {10.1186/s13023-025-03939-2},\n\tabstract = {Children born with esophageal atresia–tracheoesophageal fistula (EA–TEF) can suffer from aerodigestive morbidity that impairs their quality of life and can persist into adulthood. Ameliorating their symptom burden requires a thorough understanding of the symptom experiences that children have early in life. We aimed to explore parents’ experiences of their children’s aerodigestive symptom burden during the first years of life after being born with EA–TEF. This exploration also aimed to help determine whether a disease-specific measurement of symptom burden is needed.},\n\tlanguage = {en},\n\tnumber = {1},\n\turldate = {2025-09-02},\n\tjournal = {Orphanet Journal of Rare Diseases},\n\tauthor = {Dellenmark-Blom, Michaela and Bennett, John and Micalizzi, Rosella and Cole, Lianne and Woods, Kaylee and Cardoni, Lauren and Frain, Leah and Mohamed, Abdimajid and Yasuda, Jessica and Ngo, Peter and Widenmann, Anke and Slater, Graham and Zendejas, Benjamin},\n\tmonth = aug,\n\tyear = {2025},\n\tkeywords = {Esophageal atresia, Patient-reported outcome, Rare disease, Symptom burden, Tracheobronchomalacia, Tracheomalacia},\n\tpages = {438},\n}\n\n\n\n","author_short":["Dellenmark-Blom, M.","Bennett, J.","Micalizzi, R.","Cole, L.","Woods, K.","Cardoni, L.","Frain, L.","Mohamed, A.","Yasuda, J.","Ngo, P.","Widenmann, A.","Slater, G.","Zendejas, B."],"key":"dellenmark-blom_experiences_2025","id":"dellenmark-blom_experiences_2025","bibbaseid":"dellenmarkblom-bennett-micalizzi-cole-woods-cardoni-frain-mohamed-etal-experiencesofsymptomburdenamongyoungchildrenbornwithesophagealatresiatracheoesophagealfistulaausfocusgroupstudy-2025","role":"author","urls":{"Paper":"https://doi.org/10.1186/s13023-025-03939-2"},"keyword":["Esophageal atresia","Patient-reported outcome","Rare disease","Symptom burden","Tracheobronchomalacia","Tracheomalacia"],"metadata":{"authorlinks":{}},"downloads":1},"bibtype":"article","biburl":"https://bibbase.org/zotero-group/Leromela/5826776","dataSources":["epXRk2zQpWZQCqqGz"],"keywords":["esophageal atresia","patient-reported outcome","rare disease","symptom burden","tracheobronchomalacia","tracheomalacia"],"search_terms":["experiences","symptom","burden","young","children","born","esophageal","atresia","tracheoesophageal","fistula","focus","group","study","dellenmark-blom","bennett","micalizzi","cole","woods","cardoni","frain","mohamed","yasuda","ngo","widenmann","slater","zendejas"],"title":"Experiences of symptom burden among young children born with esophageal atresia–tracheoesophageal fistula: a US focus group study","year":2025,"downloads":1}