More Knowledge Reduces Prenatal Testing
During the first trimester of pregnancy, women are routinely offered a variety of screening tests to assess the risk for genetic disorders in the fetus. For many women, testing provides reassurance. For others, the tests can be inconclusive, leading to uncertainty and anxiety. Some follow-up diagnostic tests, such as amniocentesis and chorionic villus sampling, are invasive and carry risks, including miscarriage. While less invasive tests are now becoming available, studies suggest that women may not understand the risks and benefits of prenatal genetic tests, or even know they’re optional.
To help women make informed choices, a research team led by Dr. Miriam Kuppermann of the University of California, San Francisco, developed an interactive computer program to educate and guide decisions about prenatal testing. This “decision-support” tool uses video, audio, and text to explain the risks and benefits of various tests. The program also includes questions to help clarify the woman’s values, and emphasizes the personal nature of deciding what to do. It takes about 45 to 60 minutes to complete.
To assess the impact of this tool, the researchers studied 710 pregnant women of diverse backgrounds who hadn’t yet undergone prenatal genetic testing. The women were recruited from 8 clinical sites in the San Francisco area. The study was funded in part by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
Participants were randomly divided into 2 groups. The intervention group had access to the decision-support program. To remove financial barriers, they were able to receive prenatal tests with no out-of-pocket expense. The control group received standard care with no reimbursement for out-of-pocket costs of prenatal genetic testing. Study results appeared in the Journal of the American Medical Association on September 24, 2014.
The researchers found that women in the intervention group scored significantly higher in their understanding of genetic testing compared to the control group. Women in the intervention group were also much more likely to correctly identify the chance that an amniocentesis will cause a miscarriage and the likelihood that their fetus had Down syndrome.
The number of women who chose prenatal screening alone was similar—68.5% in the intervention group vs. 67.3% in the control group. However, women in the intervention group were less likely to undergo invasive diagnostic testing than women in the control group (5.9% vs. 12.3%). The intervention group was also more likely to forgo prenatal testing entirely (25.6% compared to 20.4% in the control group). Overall, these results suggest that the decision-support program helped women make informed choices about prenatal testing that were more closely aligned with their values.
"This does not mean that women in general don't want testing,” Kuppermann says. “But it does suggest that at least some women have undergone testing without having clarity about the implications.”
The team is now working to develop a clinic-ready decision-support tool for wider distribution. “Decisions about prenatal testing are personal and should be reflective of the patient’s own values and preferences, not those of her health-care providers," Kuppermann says.
—by Vicki Contie