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

Abstract

OBJECTIVE: To develop a consensus-based framework to support individualized prenatal counselling for congenital diaphragmatic hernia. METHOD: A RAND-modified Delphi study was conducted with an expert panel of parents (n = 10) and healthcare professionals (n = 17) working in Dutch or Flemish CDH European Reference Network (ERN) centres. In three consensus rounds, a preliminary list of recommendations (n = 101) from literature and previous studies was refined to a final list of recommendations. RESULTS: The process yielded 40 recommendations across four domains: (a) organization and logistics of the counselling, (b) information provision, (c) decision-making and (d) preconditions. For (a), counselling should take place in CDH ERN centres, involving a multidisciplinary team familiar with the severity assessment and management of foetuses and infants with CDH. For (b), both medical and psychosocial aspects should be discussed. For (c), options for pregnancy continuation, antenatal management where applicable, or termination must be clearly explained, ensuring parental understanding, autonomy, and value clarification. For (d), high-quality, personalized information, decision-making support, and care for mental health are essential. CONCLUSION: A framework for prenatal counselling for CDH was developed, combining evidence-based extraction of recommendations with expert consensus. It incorporates the needs, experiences, perceptions, and perspectives of both parents and healthcare providers.