Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

Guidelines on management of extreme prematurity differ regarding the lowest limits of gestation for which active support can or should be offered the recommendations for the role of parents in the decision making. In addition, the use of gestational age (GA) as a cutoff has been debated because other factors also determine prenatal outcome. From 22 through 24 to 25 weeks' GA, there is a window where parents can be involved in decision making& opinions vary on the best time for prenatal counseling in cases of extreme prematurity and counseling practices differ between countries. These researchers sought to develop evidence-based recommendations to support prenatal counseling in cases of extreme prematurity, focusing on decision making, content, delivery, and organization of the counseling.The researchers performed a nationwide multicenter RAND-modified Delphi method study with 5 steps from November 2016 to December 2017 in the Netherlands. Recommendations from literature and previous studies informed the discussion, and a panel of 21 experts, with 6 pairs of parents, 7 obstetricians, and 8 neonatologists, rated the recommendations on importance for inclusion in the framework. The parents all experienced an extreme premature birth at 24 weeks' GA and consented to the panel. They also received counseling in 5 different hospitals. The panel ratings were then discussed in a consensus meeting. The final set of recommendations was approved and transformed into a framework.From the literature, 128 recommendations came from previous Dutch studies. Going through the 5-step process, 101 recommendations were included in the framework: 20 for organization, 10 for decision making, 55 for content, and 16 for style of counseling. Ultimately, the most important recommendations regarding organization were to have both parents involved in the counseling with both the neonatologist and obstetrician. The shared decision-making model was recommended for deciding between active support and comfort care. Regarding content of conversation were explanation of treatment options, information on survival, risk of permanent consequences, impossibility to predict an individual course, possibility for multiple future decision moments, and a discussion on parental values and standards. In general, it was considered important to avoid jargon, check understanding, and provide a summary.The group succeeded in developing a framework for prenatal counseling in extreme prematurity, which contains recommendations and tools for personalization in the domains of organization, decision making, content, and style of prenatal counseling.