Experiences of high-risk pregnant women who were offered a choice between non-invasive prenatal testing, invasive testing or no follow-up test

摘要

OBJECTIVES: The TRIDENT study (Trial by Dutch laboratories for Evaluation of Non-Invasive Prenatal Testing) evaluates the implementation of non-invasive prenatal testing (NIPT) in the Dutch healthcare system. Here we report on the preferences and experiences of pregnant women at high risk for fetal aneuploidy who were offered a choice between NIPT, invasive testing or no follow-up test. METHODS: A nationwide prospective cohort study among pregnant women at high risk for fetal aneuploidy because of first trimester screening results (risk ≥1:200) or medical history. Questionnaires were administered to the women, to be completed after counselling and after receiving the test-results, at seven (of the eight) prenatal diagnostic centers in the Netherlands. The questionnaires addressed: women's preference for follow-up testing, intention to terminate the pregnancy, attitudes, knowledge, decisional conflict, anxiety and satisfaction. RESULTS: Pre- and post-test questionnaires were completed by n = 1,106 (86% response) and n = 686 (67% response) women, respectively. Preliminary analyses show that the majority of respondents (92%) preferred NIPT, 5% invasive testing, 2% were unsure, and 1% declined testing. The main reason to prefer NIPT was safety for the child (92%). Of the 60 women preferring invasive testing, 52% did so because of test-accuracy, 25% desired more rapid test-results, 5% because it provides more information, and 18% reported other reasons. Most women (92%) felt that they made a well-informed decision, and 75% reported that this decision was easy to make. Intention to terminate the pregnancy for Down syndrome was lower among women preferring NIPT (58%) compared to women preferring invasive testing (87%). Women were highly satisfied with NIPT. However, 64% perceived the waiting time for NIPT results (mean: 11 days (range 5-32)) as too long, while 3% in retrospect would have preferred a different follow-up test, mostly to avoid the long waiting time. CONCLUSIONS: Most pregnant women in our study felt they could make an informed decision. The majority of women prefer NIPT, mainly because it has no miscarriage risk. Reducing turnaround time for test-results is our next challenge in meeting women's needs.