A Framework for Prenatal Counselling Recommendations in Congenital Diaphragmatic Hernia: A RAND-Modified Delphi Study

Area of Science:

• Medical Genetics
• Pediatric Surgery
• Maternal-Fetal Medicine

Background:

• Congenital diaphragmatic hernia (CDH) presents complex management challenges.
• Prenatal counseling for CDH requires a structured, evidence-based approach.
• Existing counseling protocols may not fully integrate parental perspectives.

Purpose of the Study:

• To establish a consensus-based framework for individualized prenatal counseling in CDH.
• To enhance the quality of information and decision-making support for families affected by CDH.
• To align healthcare professional and parental expectations regarding CDH management.

Main Methods:

• A RAND-modified Delphi study involving a multidisciplinary expert panel.
• Inclusion of parents (n=10) and healthcare professionals (n=17) from CDH European Reference Network (ERN) centers.
• Iterative refinement of recommendations through three consensus rounds.

Main Results:

• A framework comprising 40 recommendations across four domains: organization, information provision, decision-making, and preconditions.
• Recommendations emphasize multidisciplinary care within specialized CDH ERN centers.
• Essential elements include discussing medical/psychosocial aspects, clarifying options (continuation, management, termination), and supporting parental autonomy and mental health.

Conclusions:

• A comprehensive framework for prenatal CDH counseling has been developed.
• The framework effectively integrates evidence-based recommendations with expert consensus.
• It addresses the critical needs, experiences, and perspectives of both parents and healthcare providers in CDH care.