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Defining outcomes following congenital diaphragmatic hernia using standardised clinical assessment and management

Hanneke IJsselstijn1, Cormac Breatnach2, Aparna Hoskote3

  • 1Department of Intensive Care and Pediatric Surgery, Erasmus MC-Sophia Children's Hospital University Medical Center Rotterdam, Rotterdam, The Netherlands. h.ijsselstijn@erasmusmc.nl.

Pediatric Research
|June 20, 2018
PubMed

Insights

Improved survival for congenital diaphragmatic hernia (CDH) necessitates long-term follow-up. This review examines current practices and literature, highlighting the need for standardized, multidisciplinary care for CDH survivors to enhance quality of life.

Area of Science:

  • Pediatric Surgery
  • Neonatology
  • Developmental Pediatrics

Background:

  • Congenital diaphragmatic hernia (CDH) survival rates have improved due to advancements in treatment.
  • The CDH EURO consortium was formed in 2008 to standardize management and promote research across European centers.
  • Knowledge gaps regarding long-term outcomes for CDH survivors hinder the development of optimal care pathways.

Purpose of the Study:

  • To evaluate current long-term follow-up practices within CDH EURO consortium centers.
  • To review existing literature on the long-term outcomes of CDH patients published since 2000.
  • To advocate for standardized, multidisciplinary follow-up programs for CDH survivors.

Main Methods:

  • Review of current long-term follow-up protocols in CDH EURO consortium centers.
  • Systematic literature review of studies on CDH long-term outcomes published from 2000 onwards.
  • Discussion of a proposed collaborative project utilizing Standardized Clinical Assessment and Management Plan (SCAMP) methodology.

Main Results:

  • CDH survivors face disease-specific morbidities and are at risk for neurodevelopmental issues and educational challenges.
  • These long-term issues can negatively impact societal participation and overall quality of life.
  • Current follow-up practices may lack standardization across centers, potentially limiting comprehensive care.

Conclusions:

  • Long-term multidisciplinary follow-up programs are essential for CDH survivors.
  • Standardized international follow-up using SCAMP methodology is proposed to ensure uniform data collection and care.
  • Addressing long-term outcomes is crucial for improving the lifelong well-being of individuals with CDH.

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