Can we improve risk communication about non‐invasive prenatal testing?

Abstract

Diagnostic information from prenatal screening for Down syndrome can help families prepare for the birth of a child with special needs or help them decide whether they want to continue with the pregnancy. Currently in the UK women are offered the combined screening test (a blood test and an ultrasound) that categorises them into 'higher risk' or 'lower risk' groups (see www.nhs.uk). Women at higher risk are offered a diagnostic test, such as amniocentesis or chorionic villus sampling (CVS). These diagnostic tests are invasive and carry a 0.5-1% risk of miscarriage.In addition to these tests, non-invasive prenatal testing (NIPT)currently only available privatelywill soon be introduced into the screening program. 1,2 NIPT is conducted using a blood test and it is more sensitive and more specific than other screening tests. In addition, NIPT can be offered earlier in the pregnancy and allows some patients to avoid the risks of diagnostic testing. Analyses indicate that the implementation of NIPT as a contingent test (i.e. offered to women who receive a higher-risk result from the combined test) will improve the quality of care. 1 However, even with improved tests, the ethical imperative for informed patient decision-making remains. Despite its better efficiency, NIPT is not 100% accurate, and some women may still choose to confirm the results using the invasive tests.Providers of screening tests and programs usually make an effort and provide information to help women make decisions. Women are expected to make informed decisions regarding whether to get screened, what tests to undergo, and how to proceed with their pregnancy given the test results. An informed decision about prenatal screening means that the decision-maker has obtained sufficient knowledge, deliberated carefully about the available options, and made a final choice that is consistent with her (and her partner's) values. 3 Here we would like to draw attention to one specific and essential aspect of this decision-making process: the comprehension of risk communications.When it comes to potential risks and benefits of procedures, informed decisions are meant to be evidence-based. This means that women should receive risk information and it is of interest that their comprehension of this information is facilitated rather than obscured. Common risk communications regarding prenatal screening include the risk of having a baby with Down syndrome, the chance of getting a false positive test, or the chance of a miscarriage in the case of invasive testing. A recent analysis of decision aids for Down syndrome prenatal testing located only one decision aid that addressed NIPT. 4 This number will most definitely increase, as will the frequency of patient-provider interactions in which the advantages and disadvantages of NIPT are discussed. With this in mind, we wanted to offer several timely, evidence-based recommendations regarding how to communicate risk and numerical information to women considering NIPT.