Difference in attitude concerning prenatal screening, diagnosis, and possible termination for Down syndrome: Comparing women with an affected sibling and women without an affected sibling.

摘要

This study sought to determine if having a sibling with Down syndrome affected women's opinions of prenatal screening, prenatal diagnosis, and possible termination for Down syndrome. In total, 177 women who had a sibling with Down syndrome and 86 women who did not have a sibling with Down syndrome participated in an online survey. Both groups of women were predominantly Caucasian, well educated and middle class. They were statistically different in their ages, marital status, pregnancy histories, religion, and having met an individual with Down syndrome. Both groups of women were similar in the decisions they would make concerning first trimester screening, CVS, amniocentesis, and possible termination of an affected pregnancy. For first trimester screening the majority of the siblings and non-siblings would choose to have screening. Likewise the majority of both groups would not choose CVS. Although the siblings chose mostly not to have amniocentesis and the non-siblings were more of the opinion that they would utilize amniocentesis, the difference was not statistically significant. The difference in opinions for the two groups involved second trimester screening. Themes expressed by the women in open-ended responses were, the benefit of screening for preparation purposes and that the potential risk of miscarriage was not worth the knowledge.;However, even though the non-sibling group was more likely to choose to have second trimester screening, the majority of the sibling groups also indicated that they would have the screening. Both groups expressed that they would be more likely to continue a pregnancy affected with Down syndrome. Previous studies that reported actual termination rates for Down syndrome of 71-90% compared to the 77.9-88.2% hypothetical continuing rate in this study. Overall the study demonstrated that when comparing the two groups of women, having a sibling with Down syndrome did not affect their decision making prenatally. Both groups are open to first and second trimester screening, are more likely to choose amniocentesis than CVS if screening results suggest increased risk, and would likely continue a pregnancy affected with Down syndrome.