Decisions about amniocentesis by advanced maternal age patients following maternal serum screening may not always correlate clinically with screening results: Need for improvement in informed consent process

Abstract

We evaluated the prenatal diagnosis utilization patterns of advanced maternal age (AMA) patients who underwent serum screening to assess how screening results correlated with their decisions regarding amniocentesis. A 6-year review (1994-1999) of laboratory records identified 2,456 AMA patients who underwent multiple-marker serum screening. The relationship between screening results and patients' decisions on whether or not to undergo amniocentesis was assessed. Among the 841 AMA patients with positive screens, more than half (52%) declined amniocentesis. Of the 1,615 patients with negative serum screening results, 208 (13%) opted for amniocentesis. We concluded that decisions by AMA patients regarding amniocentesis may not always correlate clinically with maternal serum screening results. Possible explanations, including how the state of informed consent may or may not contribute to these decisions, are discussed. It is suggested that understanding the reasons for these decisions may identify opportunities for improving service delivery to all pregnant patients considering prenatal testing. Use of a questionnaire is proposed as one mechanism for gaining a clearer understanding of the possible factors contributing to AMA patient decisions.

A systematic review of factors influencing uptake of invasive fetal genetic testing by pregnant women of advanced maternal age

“…Of the eleven papers included, all were based on quantitative studies. Four papers included data collected in the United States (US) (Marini et al, 2002;Baker et al, 2004;Kuppermann et al, 2006;Nakata et al, 2010), one from South Africa (Urban et al, 2011), two from Canada (Humphreys et al, 2003;Kaiser et al, 2004), one from China (Lo et al, 2010), one from Portugal (Nazaré et al, 2011), one from Italy (Vergani et al, 2002) and one from Israel (Muhsen et al, 2010). In seven papers, the participants were solely women (Baker et al, 2004;Kaiser et al, 2004;Kuppermann et al, 2006;Lo et al, 2010;Nakata et al, 2010;Urban et al, 2011;Vergani et al, 2002), whereas Nazaré et al (2011) andHumphreys et al (2003) included women and their partners (in the remaining two papers counselling was not mentioned).…”

“…Six papers reported prospective studies (Vergani et al, 2002;Humphreys et al, 2003;Kaiser et al, 2004;Kuppermann et al, 2006;Muhsen et al, 2010;Nazaré et al, 2011), four reported retrospective studies (Marini et al, 2002;Baker et al, 2004;Nakata et al, 2010;Urban et al, 2011) and Lo et al (2010) utilised both prospective and retrospective approaches. Four studies were survey-based (Humphreys et al, 2003;Kuppermann et al, 2006;Muhsen et al, 2010;Nazaré et al, 2011).…”

“…A summary of screening or testing services is presented in Table 2, indicating that in some situations invasive testing was available to all pregnant women (Marini et al, 2002;Baker et al, 2004;Kaiser et al, 2004;Lo et al, 2010), whereas in others the offer of testing was based on AMA (Vergani et al, 2002;Humphreys et al, 2003;Kuppermann et al, 2006;Muhsen et al, 2010;Nakata et al, 2010;Nazaré et al, 2011). Lo et al (2010) described the change in policy in China, where prior to 2006 women were offered either direct invasive tests or a variety of screening tests for Down syndrome.…”

“…Four studies were survey-based (Humphreys et al, 2003;Kuppermann et al, 2006;Muhsen et al, 2010;Nazaré et al, 2011). In other case series studies, authors retrieved data from electronic databases (Lo et al, 2010;Nakata et al, 2010;Urban et al, 2011) and hospital records (Marini et al, 2002;Baker et al, 2004;Lo et al, 2010;Muhsen et al, 2010;Urban et al, 2011).…”

Does labeling prenatal screening test results as negative or positive affect a woman’s responses?

“…While research suggests that women can effectively incorporate such risk information into their decision making, [11] decisions regarding amniocentesis are influenced by the a priori risk level, [12] and do not appear to always correlate clinically with the test results received. [13,14] Of course, personal beliefs also influence decisions about invasive testing, including confidence that the results would not change behavior, mistaken beliefs that "negative" screening test results imply no risk, [15,16] and failures of the screening test to reassure. [15] In addition to these factors, however, the format used to present screening test results to women appears to directly impact decision making.…”