Talking Points: Women's Information Needs for Informed Decision‐Making About Noninvasive Prenatal Testing for Down Syndrome

Abstract

Adequate knowledge is a vital component of informed decision-making; however, we do not know what information women value when making decisions about noninvasive prenatal testing (NIPT). The current study aimed to identify women's information needs for decision-making about NIPT as a first-tier, non-contingent test with out-of-pocket expense and, in turn, inform best practice by specifying the information that should be prioritized when providing pre-test counseling to women in a time-limited scenario or space-limited decision support tool. We asked women (N = 242) in Australia to indicate the importance of knowing 24 information items when making a decision about NIPT and to choose two information items they would most value. Our findings suggest that women value having complete information when making decisions about NIPT. Information about the accuracy of NIPT and the pros and cons of NIPT compared to other screening and invasive tests were perceived to be most important. The findings of this study can be used to maximize the usefulness of time-limited discussions or space-limited decision support tools, but should not be routinely relied upon as a replacement for provision of full and tailored information when feasible.

Clinical performance of non-invasive prenatal served as a first-tier screening test for trisomy 21, 18, 13 and sex chromosome aneuploidy in a pilot city in China

“…The first-trimester screening offers a noninvasive option for the early detection of aneuploidy pregnancies. To calculate the risk of fetal suffering from Down syndrome, this screening is done by a combination of two biochemical markers (1) serum-free b-human chorionic gonadotrophin (free b-hCG) and (2) pregnancy-associated plasma protein-A (PAPP-A ) [37], which is also called combined firsttrimester screening (CFTS). In the second trimester of pregnancy matemal serum α-fetoprotein (AFP) levels are, on average, lower in pregnancies associated with fetal Down syndrome than in unaffected pregnancies, and some centers offer antenatal screening for Down syndrome based on serum AFP as well as maternal ag e [26].…”

Experiences of non‐invasive prenatal screening: A survey study

“…[10][11][12] It is recommended that pre-test counselling regarding NIPT informs patients that testing is elective and is comprised of objective information (eg accuracy of the test, incidental findings). 3,7,[13][14][15] Indeed, a recent Australian study of women highlighted the strongly held value of being provided with complete information about the pros and cons of NIPT. However, considering the provision of pre-test counselling is not monitored in Australia, it is likely that the information provided to women will differ, depending on the professional providing the counselling, impacting informed decision-making.…”

The Influence of Experiential Knowledge and Societal Perceptions on Decision-Making Regarding Non-Invasive Prenatal Testing (NIPT)

“…Prior studies investigating NIPT-related decision-making have primarily focused on the clinical interaction as the environment for acquisition and application of biomedical knowledge to make informed decisions [16,17,18]; for exceptions see [9,19,20]. However, analysis of decision-making must consider "discourses beyond the biomedical domain" [19] since a significant portion of the decision-making process occurs outside of the clinical encounter [21] and may rely upon perceived societal values and experiential knowledge regarding NIPT.…”