What understanding of decision‐making in prenatal screening could decision analysis provide?

Abstract

Prenatal screening and diagnosis aim to provide information to pregnant women regarding the risks of their pregnancy. In the case of fetal chromosomal abnormalities, this is offered as an optional component of prenatal care to give women the choice of continuing or terminating an affected pregnancy, but is often seen by the woman as reassurance that her fetus is at low risk or does not have Down syndrome. While maternal age is used as a basis for background risk calculation, the investigation of other markers, such as nuchal translucency (NT) thickness and maternal serum markers in the first or second trimester allow for individual risk to be calculated.The implementation of screening programs relies on combinations of various methods of risk assessment. Performance of screening programs has been evaluated mainly within an epidemiological or economic context, with pregnant women's decision-making summarized as uptake rates. However, both the optional and individualized components of prenatal screening place women's decision-making at the heart of the analysis of screening programs 1,2 .Understanding women's decision-making and attitudes towards screening and diagnosis is therefore a crucial issue. Most studies have focused on informed choices 3 -6 , with few addressing decision analysis frameworks as a means of providing insight into women's decision-making. It was my aim in this Editorial to explore the contribution of decision analysis in understanding individual decisionmaking in prenatal screening and invasive testing. Information and decision-makingIndividual decision analysis frameworks are based on the hypothesis that information supplied about choice options makes individuals capable of expressing a preference. Choice options are characterized by their possible outcomes, with associated likelihoods generally expressed as probabilities. Based on this representation of decision problems, choice elicitation tools such as the 'decision board' 7,8 have been designed as bedside instruments, used to decide between therapeutic alternatives 9 -11 . More specifically, decision boards are designed as trees that segregate individual choices into three components: options, chances of outcomes and outcomes, with chances of outcomes being illustrated as pie charts and outcomes being described by means of 'information cards'. Mainly used in oncology, decision boards appear to enhance patients' understanding of possible treatments as well as their awareness of individual choice and their capacity for informed decision-making 12,13 .Prenatal screening for fetal aneuploidies presents important issues concerning informed choice and published studies have mainly explored the degree of understanding resulting from information provided on test options and their results. However, decision boards have not been used in this context. Further studies should assess the practicality of using decision boards in prenatal screening and diagnosis and their impact on informed choice. Outcomes and decision-makingConsidering that choice opt...

Non-Invasive Prenatal Diagnosis Using Cell-Free Fetal DNA Technology: Applications and Implications

“…Examples include the administration of antenatal dexamethasone to reduce genital ambiguity in female fetuses affected by congenital adrenal hyperplasia [31]. The availability of NIPD may also be valued by prospective parents of children affected by certain genetic conditions if it influences the clinical management of the pregnancy or birth [32,33]. …”