Development of Nationwide Recommendations to Support Prenatal Counseling in Extreme Prematurity

Abstract

OBJECTIVES: To develop a nationwide, evidence-based framework to support prenatal counseling in extreme prematurity, focusing on organization, decision-making, content, and style aspects. METHODS: A nationwide multicenter RAND–modified Delphi method study was performed between November 2016 and December 2017 in the Netherlands. Firstly, recommendations were extracted from literature and previous studies. Secondly, an expert panel (n = 21) with experienced parents, obstetricians, and neonatologists rated the recommendations on importance for inclusion in the framework. Thirdly, ratings were discussed in a consensus meeting. The final set of recommendations was approved and transformed into a framework. RESULTS: A total of 101 recommendations on organization, decision-making, content, and style were included in the framework, including tools to support personalization. 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. Main recommendations 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. It was considered important to avoid jargon, check understanding, and provide a summary. The expert panel, patient organization, and national professional associations (gynecology and pediatrics) approved the framework. CONCLUSIONS: A nationwide, evidence-based framework for prenatal counseling in extreme prematurity was developed. It contains recommendations and tools for personalization in the domains of organization, decision-making, content, and style of prenatal counseling.

Survival and causes of death in extremely preterm infants in the Netherlands

“…14 28 29 Recently, in the Netherlands, an evidence-based, nationwide framework for prenatal counselling was developed, with the advantage to exclude interprofessional variance based on different values of doctors and to support personalisation allowing variation in parental preferences in decision making. 30 Counselling recommendations, treatment recommendations and outcome data are inevitably linked. The 2010 guideline on perinatal care in extremely preterm infants is currently being revised, taking all the above factors into account.…”

Parental understanding of crucial medical jargon used in prenatal prematurity counseling

“…Finally, a study by Geurtzen et al surveyed parents and medical professionals to determine recommendations for the style, content, decision making, and organization of prenatal counseling. Recommendations included avoiding jargon, adapting language to the level of the parents, and checking for understanding [28]. Taken together, these studies highlight the large impact of word choice on parent understanding and decision making.…”

Frühgeborene an der Grenze der Lebensfähigkeit (Entwicklungsstufe S2k, AWMF-Leitlinien-Register Nr. 024/019, Juni 2020)

“…Die Einschätzung der medizinischen Möglichkeiten im aufnehmenden Perinatalzentrum sollte zeitnah von qualifizierten Geburtsmedizinern und Neonatologen gemeinsam erfolgen [88]. Dabei können unterschiedliche Ansichten der verschiedenen Fachkollegen zum Ausdruck kommen [80].…”

“…Das Gespräch hat den oben skizzierten Grundsätzen einer gemeinsamen, partizipativen Entscheidungsfindung zu folgen. Dabei sollte der Entscheidungsspielraum der Eltern ausgesprochen werden und auf die Gleichrangigkeit eines kurativen und palliativen Vorgehens in der Grauzone hingewiesen werden [88,89] Frühgeborene mit einem Gestationsalter von 23 0/7 -23 6/7 Schwangerschaftswochen sowie Frühgeborene mit einem Gestationsalter von 24 0/7 -24 6/7 Schwangerschaftswochen und einem Gewicht unter 400 g…”