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Transitioning to adulthood in congenital diaphragmatic hernia, how do we design the right services?

S Kamphuis Lieke1, M Schnater Johannes2, C W Spaander Manon3

  • 1Dept of Pulmonology, Erasmus MC, Rotterdam, the Netherlands.

Seminars in Fetal & Neonatal Medicine
|July 20, 2025
PubMed

Insights

Congenital diaphragmatic hernia (CDH) survivors require lifelong, multidisciplinary care due to poorly understood morbidities. This review highlights the need for comprehensive services supporting CDH patients from childhood through adulthood.

Area of Science:

  • Pediatric Surgery
  • Neonatal Intensive Care
  • Long-term Health Outcomes

Background:

  • Healthcare focus for congenital diaphragmatic hernia (CDH) survivors has shifted from survival to managing associated morbidities.
  • An increasing number of CDH patients are surviving into adulthood, necessitating long-term care strategies.
  • The natural progression and long-term effects of CDH-related morbidities are not well understood.

Purpose of the Study:

  • To review the outcomes of CDH survivors in childhood and young adulthood.
  • To emphasize the critical need for lifelong, multidisciplinary care for CDH patients.
  • To address challenges in transitional care for adolescents with chronic health conditions.

Main Methods:

  • Literature review of outcomes for congenital diaphragmatic hernia survivors.
  • Analysis of long-term data and evidence regarding associated morbidities.
  • Exploration of challenges in transitional care programs.

Main Results:

  • CDH survivors face ongoing health challenges that become more apparent in childhood and young adulthood.
  • Lifelong, multidisciplinary care is essential for managing diverse healthcare needs.
  • Transitional care for adolescents with chronic conditions presents significant challenges.

Conclusions:

  • Effective, lifelong healthcare services are crucial for congenital diaphragmatic hernia survivors.
  • Further research is needed to better understand the long-term course of CDH morbidities.
  • Recommendations are provided for optimizing lifelong care models for CDH patients.

Keywords:
AdolescentCongenital diaphragmatic herniaFollow-upTransitional care programsYoung adult

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