Participation in Maternal Marker Screening for Down Syndrome: Contribution of the Information Delivered to the Decision-Making Process

Abstract

Objective: In France, health care providers now have to fulfill two requirements before serum marker screening for Down syndrome can be carried out: provide a written statement confirming that they informed the pregnant woman about the test and obtain the woman’s written consent. A survey was designed to assess: (1) women’s opinion on the explanations they received when the screening test was offered and when test results were given, and (2) the decisions women planned to make in light of the test results (i.e. to carry out amniocentesis or not). Methods: The survey was intended for all French pregnant women who underwent the serum marker screening test during the first week of October 1998. The questionnaire was sent to women via clinical laboratories (3,825 questionnaires were sent to the 54 laboratories authorized for Down syndrome screening in France). Besides χ² tests and tests of comparisons of paired proportions, we conducted a hierarchical clustering analysis and qualitatively analyzed the free comments provided by women. Results: The response rate was 39% (n = 1,473). Explanations given by the provider at the time the test was offered were not clear and ample enough for 38.8% of women. Furthermore, 45.9% of women stated the same opinion about the explanations provided with the test results. Based on the test results, amniocentesis was recommended to 125 high-risk women; 20.8% of them were going to decline the offer or had not yet decided. Among low-risk women, 13% requested amniocentesis or had not yet decided. The opinion of these high- or low-risk women on the clarity and ampleness of the explanations provided with the test results was similar to that of high-risk women who wished to carry out amniocentesis. The hierarchical clustering analysis led us to identify clusters of women who mainly differed according to their opinion (anxious or reassured) on the explanations provided, regardless of their risk (high or low). Conclusion: Women’s decision regarding screening for Down syndrome requires them to promptly integrate complex information on what the test is and entails. The question is then raised as to the type of information that is actually disclosed or that could be disclosed, based on how women value its contribution to decision-making.