Clinical Care Trajectory Assessment of Children With Congenital Diaphragmatic Hernia and Neurodevelopmental Impairment

jpedsurg.org

Interdisciplinary long-term health surveillance identifies opportunities to mitigate CDH-related multisystem morbidity, particularly in patients with neurodevelopmental impairment (NDI). However, no studies to date have assessed the impact of these morbidities on the patient/family. Our aim was to describe the clinical trajectory of patients with CDH and NDI (CDH-NDI), and to explore the lived experience and satisfaction of families with existing support resources.

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Article · Sep 2024 · 1 min read

In brief

This study examines the clinical trajectory and multisystem complications in children with congenital diaphragmatic hernia who develop neurodevelopmental impairment. Researchers explore family experiences and satisfaction with support resources to identify gaps in long-term care for this vulnerable population.

Interdisciplinary long-term surveillance can identify opportunities to reduce multisystem morbidity in CDH patients with NDI.
No prior studies have assessed how CDH-related morbidities impact patients and families from their perspective.
Study aims to describe clinical trajectory of CDH-NDI patients and explore family experiences with support resources.
Neurodevelopmental impairment is a key factor requiring targeted follow-up in CDH survivors.
Family satisfaction with existing support resources remains an unexplored area needing investigation.

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