Medical decision making and practices surrounding extremely premature birth remains challenging for parents and care providers alike. Recently, concerns have been raised regarding wide practice variation, selection bias, and the limitations of outcomes data in this population. The purpose of this review is to summarize the recent literature relevant to deliveries at extreme prematurity with a focus on outcomes, approaches, and institutional variation.
Newer data suggest that evidence-based clinical guidelines and protocols for both pregnant women and infants at extreme prematurity are emerging and may improve care and outcomes at lower gestational ages. It has also been recently shown that wide practice variation, selection bias, and methodological limitations of outcomes data reporting with respect to deliveries at extreme prematurity exist.
Counseling at extreme prematurity should prioritize eliciting parental values and preferences with the goal of personalized shared decision-making. Providers should recognize limitations in counseling families at extreme prematurity, including selection bias, institutional variation, outcomes inaccuracies, prognostic uncertainty, and implicit biases. Standardized reporting of perinatal outcomes should be developed to help alleviate current outcomes misrepresentations and improve counseling at extreme prematurity. Education for providers in advanced communication skills is needed when counseling at extreme prematurity.
Division of Newborn Medicine, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA
Correspondence to Christy L. Cummings, MD, Division of Newborn Medicine, Boston Children's Hospital, Harvard Medical School, 300 Longwood Avenue, Hunnewell 437, Boston, MA 02115, USA. Tel: +1 617 355 6027; fax: +1 617 730 0486; e-mail: Christy.Cummings@childrens.harvard.edu