Identifying Strategies to Improve Shared Decision Making for Pregnant Patients’ Decisions about Prenatal Genetic Screens and Diagnostic Tests

Abstract

Purpose Prenatal genetic screens and diagnostic tests are vital components of prenatal care. The first prenatal visit is a critical time in the decision-making process when patients decide whether to use these tests in addition to address a series of other essential prenatal care aspects. We conducted this study to examine the role of a shared decision-making (SDM) instrument to support these discussions. Methods We conducted a cluster randomized controlled trial of patients allocated to an SDM tool or usual care at their first prenatal visit. Participants completed a baseline survey to measure decision-making needs and preferences. Direct observation was conducted and analyzed using the OPTION scale to measure SDM during prenatal genetic testing discussions. Results Levels of SDM were similar across groups ( P = 0.081). The highest levels of SDM were observed during screening test discussions (NEST 2.4 ± 0.9 v. control 2.6 ± 1.0). Lowest levels were observed in discussions about patients’ preference for risk versus diagnostic information (NEST 1.0 ± 1.1 v. control 1.2 ± 1.3). Conclusion Study findings demonstrate the need for targeted patient-focused and provider-focused efforts to improve SDM to enhance patients’ informed decision making about these options. Importantly, patients’ baseline knowledge and attitudes need to be considered given that patients with less knowledge may need more carefully crafted communication. Highlights Choices about whether, when, and how to use prenatal genetic tests are highly preference-based decisions, with patients’ baseline attitudes about these options as a major driver in health care discussions. The decision-making process is also shaped by patient preferences regarding a shared or informed decision-making process for medical decisions that are highly personal and have significant ramifications for obstetric outcomes. There is a need to develop targeted efforts to improve decision making and enhance patients’ ability to make informed decisions about prenatal genetic tests in early pregnancy.