ArticlePediatric surgery international2020
Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey.
Article in Pediatric surgery international, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses that pooled it.
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Who cites it
12 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Comprehensive meta-analysis of surgical procedure for congenital diaphragmatic hernia: thoracoscopic versus open repair.Pediatric surgery international · 2024Pooled it
- A clinical consensus guideline for nutrition in infants with congenital diaphragmatic hernia from birth through discharge.Journal of perinatology : official journal of the California Perinatal Association · 2024Guideline
- Thoracoscopic hiatoplasty in congenital diaphragmatic hernia is safe and less invasive: a prospective propensity-matched short-term study.Pediatric surgery international · 2025Article
- Exploring Dysphagia in Congenital Diaphragmatic Hernia: A Retrospective Analysis.Pediatric reports · 2025Article
- Early assessment and analysis of high-risk factors of neurodevelopmental impairment in neonates with congenital diaphragmatic hernia.Frontiers in pediatrics · 2025Article
- Top 10 research priorities for congenital diaphragmatic hernia in Australia: James Lind Alliance Priority Setting Partnership.Archives of disease in childhood. Fetal and neonatal edition · 2024Article
- Congenital diaphragmatic hernia: exploring the intersection of personal experience and research.Pediatric research · 2024Article
- Long-term follow-up of patients with congenital diaphragmatic hernia.World journal of pediatric surgery · 2024Review
- Long-Term Evaluation of Gastroesophageal Reflux in Neonates with and without Preventive Anti-reflux Surgery at the Time of Congenital Diaphragmatic Hernia Repair.Children (Basel, Switzerland) · 2022Article
- Congenital diaphragmatic hernia.Nature reviews. Disease primers · 2022Review
- Prenatal stomach position and volume in relation to postnatal outcomes in left-sided congenital diaphragmatic hernia.Prenatal diagnosis · 2022Article
- Unsolved problems in CDH follow-up.Frontiers in pediatrics · 2022Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCDH UK is a registered charity governed by a volunteer committee and providing informal support to patients, families and healthcare workers affected directly or indirectly with congenital diaphragmatic hernia (CDH) internationally. This is the first patient-led survey undertaken by CDH UK aiming for highlighting the feeding problems and their impact on the daily life of CDH survivors.
methodsAnswers from CDH survivors were collected through an online questionnaire (SurveyMonkey MAIN
resultsOverall, 151 patients answered some parts of the survey and 102 patients completed the questionnaire. Overall, 116 (76.8%) responders reported suffering from any type of feeding issue. Gastric acid reflux (GER) and growth retardation were the commonest symptoms experienced by 97 (91.5%) and 72 (62.2%) responders, respectively. Only 18 (17.0%) responders have received any written information on feeding or details of patient/parent support. Eighty (75.5%) responders are satisfied with the level of support they are receiving, but 78 (76.4%) answered that the whole experience associated with the disease has been very or extremely stressful.
conclusionsCDH survivors frequently have various issues with feeding, which may not be adequately supported or discussed clinically. It is desirable to assist the patients to reliable resources of long-term support, including multidisciplinary team (MDT) approach.
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