Judith Leyens , Bartolomeo Bo , Andreas Heydweiller , Thomas Schaible , Michael Boettcher , Lukas Schroeder , Andreas Mueller , Florian Kipfmueller
{"title":"先天性膈疝患儿出院后家长对营养和喂养困难的报告","authors":"Judith Leyens , Bartolomeo Bo , Andreas Heydweiller , Thomas Schaible , Michael Boettcher , Lukas Schroeder , Andreas Mueller , Florian Kipfmueller","doi":"10.1016/j.earlhumdev.2024.106074","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>Congenital diaphragmatic hernia (CDH) affects 1 in 3000–5000 newborns. In survivors, long-term complications include gastroesophageal reflux (GER), feeding difficulties, and failure to thrive. Data from the parents' perspective remain scarce. This study aims to report the prevalence and impact of feeding difficulties on CDH families after discharge.</p></div><div><h3>Methods</h3><p>National web-based survey amongst families with CDH infants in 2021.</p></div><div><h3>Results</h3><p>Caregivers of 112 CDH survivors participated. The baseline characteristics were representative with 54 % male, 83 % left-sided CDH, prenatal diagnosis in 83 %, and 34 % requiring extracorporeal membrane oxygenation. Most infants (81 %) were discharged within three months, with 62 % feeding by mouth, and 30 % requiring a feeding tube. Persisting feeding difficulties were experienced by 73 %, GER being the most common (66 %), followed by insufficient weight gain (64 %). After discharge, 41 % received medical support for failure to thrive. The primary-care pediatrician was consulted most frequently for information (61 %) and treatment of feeding difficulties (74 %). Therapeutic success was reported in 64 %. A cessation of symptoms was achieved in 89 % within three years.</p></div><div><h3>Conclusion</h3><p>The majority of CDH infants had persistent feeding difficulties. This survey highlights the impact surrounding feeding problems on CDH families. Further studies and support systems are needed to raise the quality of life in CDH infants and their families.</p></div>","PeriodicalId":11435,"journal":{"name":"Early human development","volume":"195 ","pages":"Article 106074"},"PeriodicalIF":2.2000,"publicationDate":"2024-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0378378224001439/pdfft?md5=e106b96dcd67394c03a6e6253f92738c&pid=1-s2.0-S0378378224001439-main.pdf","citationCount":"0","resultStr":"{\"title\":\"Parents-reported nutrition and feeding difficulties in infants with congenital diaphragmatic hernia after hospital discharge\",\"authors\":\"Judith Leyens , Bartolomeo Bo , Andreas Heydweiller , Thomas Schaible , Michael Boettcher , Lukas Schroeder , Andreas Mueller , Florian Kipfmueller\",\"doi\":\"10.1016/j.earlhumdev.2024.106074\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Purpose</h3><p>Congenital diaphragmatic hernia (CDH) affects 1 in 3000–5000 newborns. In survivors, long-term complications include gastroesophageal reflux (GER), feeding difficulties, and failure to thrive. Data from the parents' perspective remain scarce. This study aims to report the prevalence and impact of feeding difficulties on CDH families after discharge.</p></div><div><h3>Methods</h3><p>National web-based survey amongst families with CDH infants in 2021.</p></div><div><h3>Results</h3><p>Caregivers of 112 CDH survivors participated. The baseline characteristics were representative with 54 % male, 83 % left-sided CDH, prenatal diagnosis in 83 %, and 34 % requiring extracorporeal membrane oxygenation. Most infants (81 %) were discharged within three months, with 62 % feeding by mouth, and 30 % requiring a feeding tube. Persisting feeding difficulties were experienced by 73 %, GER being the most common (66 %), followed by insufficient weight gain (64 %). After discharge, 41 % received medical support for failure to thrive. The primary-care pediatrician was consulted most frequently for information (61 %) and treatment of feeding difficulties (74 %). Therapeutic success was reported in 64 %. A cessation of symptoms was achieved in 89 % within three years.</p></div><div><h3>Conclusion</h3><p>The majority of CDH infants had persistent feeding difficulties. This survey highlights the impact surrounding feeding problems on CDH families. Further studies and support systems are needed to raise the quality of life in CDH infants and their families.</p></div>\",\"PeriodicalId\":11435,\"journal\":{\"name\":\"Early human development\",\"volume\":\"195 \",\"pages\":\"Article 106074\"},\"PeriodicalIF\":2.2000,\"publicationDate\":\"2024-07-14\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.sciencedirect.com/science/article/pii/S0378378224001439/pdfft?md5=e106b96dcd67394c03a6e6253f92738c&pid=1-s2.0-S0378378224001439-main.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Early human development\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0378378224001439\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"OBSTETRICS & GYNECOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Early human development","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0378378224001439","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"OBSTETRICS & GYNECOLOGY","Score":null,"Total":0}
Parents-reported nutrition and feeding difficulties in infants with congenital diaphragmatic hernia after hospital discharge
Purpose
Congenital diaphragmatic hernia (CDH) affects 1 in 3000–5000 newborns. In survivors, long-term complications include gastroesophageal reflux (GER), feeding difficulties, and failure to thrive. Data from the parents' perspective remain scarce. This study aims to report the prevalence and impact of feeding difficulties on CDH families after discharge.
Methods
National web-based survey amongst families with CDH infants in 2021.
Results
Caregivers of 112 CDH survivors participated. The baseline characteristics were representative with 54 % male, 83 % left-sided CDH, prenatal diagnosis in 83 %, and 34 % requiring extracorporeal membrane oxygenation. Most infants (81 %) were discharged within three months, with 62 % feeding by mouth, and 30 % requiring a feeding tube. Persisting feeding difficulties were experienced by 73 %, GER being the most common (66 %), followed by insufficient weight gain (64 %). After discharge, 41 % received medical support for failure to thrive. The primary-care pediatrician was consulted most frequently for information (61 %) and treatment of feeding difficulties (74 %). Therapeutic success was reported in 64 %. A cessation of symptoms was achieved in 89 % within three years.
Conclusion
The majority of CDH infants had persistent feeding difficulties. This survey highlights the impact surrounding feeding problems on CDH families. Further studies and support systems are needed to raise the quality of life in CDH infants and their families.
期刊介绍：
Established as an authoritative, highly cited voice on early human development, Early Human Development provides a unique opportunity for researchers and clinicians to bridge the communication gap between disciplines. Creating a forum for the productive exchange of ideas concerning early human growth and development, the journal publishes original research and clinical papers with particular emphasis on the continuum between fetal life and the perinatal period; aspects of postnatal growth influenced by early events; and the safeguarding of the quality of human survival.
The first comprehensive and interdisciplinary journal in this area of growing importance, Early Human Development offers pertinent contributions to the following subject areas:
Fetology; perinatology; pediatrics; growth and development; obstetrics; reproduction and fertility; epidemiology; behavioural sciences; nutrition and metabolism; teratology; neurology; brain biology; developmental psychology and screening.
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