This proposal seeks to pilot test, refine and evaluate an existing computerized prenatal testing decision-assisting tool. The tool is designed to assist pregnant women and their partners in making choices regarding prenatal diagnostic testing for fetal chromosomal abnormalities, including maternal serum screening, chorionic villus sampling, amniocentesis, ultrasonography and no testing. We believe that the evaluation of such decision-assisting tools is timely and important; the need for methods to support patient decision making will grow as prenatal testing guidelines change to accommodate individual preferences, and as new genetic screens become available as a result of the Human Genome Project. We will conduct a randomized controlled trial in 400 eligible women to measure the effect of the tool on knowledge about prenatal testing and its outcomes; satisfaction with decision making; and utilization of prenatal diagnostic testing. We hypothesize that women randomized to use the tool will have higher satisfaction and greater knowledge regarding prenatal testing. We also hypothesize that they will seek prenatal diagnostic testing at a different rate than women randomized to the control intervention. We will test these hypotheses in women who are currently eligible for testing: women who are 35 or older or who have abnormal maternal serum screening results. We will assemble a racially/ethnically and socioeconomically diverse cohort for the study. The proposed study builds on our previous research in prenatal diagnostic testing, and represents the next logical step in that body of work. In our most recent previous study, we surveyed over 1,000 racially/ethnically and socioeconmically diverse pregnant women, using a computerized preference-elicitation tool we developed and translated into Spanish and Chinese. Our long-term research goal is to develop methods to assist women of all ages to make informed decisions about prenatal testing, and to gain insight into how to develop patient-centered decision-assisting tools for other health decisions.
| Kuppermann, Miriam; Norton, Mary E; Gates, Elena et al. (2009) Computerized prenatal genetic testing decision-assisting tool: a randomized controlled trial. Obstet Gynecol 113:53-63 |
| Kuppermann, Miriam; Learman, Lee A; Gates, Elena et al. (2006) Beyond race or ethnicity and socioeconomic status: predictors of prenatal testing for Down syndrome. Obstet Gynecol 107:1087-97 |
| Learman, Lee A; Drey, Eleanor A; Gates, Elena A et al. (2005) Abortion attitudes of pregnant women in prenatal care. Am J Obstet Gynecol 192:1939-45; discussion 1945-7 |
| Kuppermann, Miriam; Nease Jr, Robert F; Gates, Elena et al. (2004) How do women of diverse backgrounds value prenatal testing outcomes? Prenat Diagn 24:424-9 |
| Learman, Lee A; Kuppermann, Miriam; Gates, Elena et al. (2003) Social and familial context of prenatal genetic testing decisions: are there racial/ethnic differences? Am J Med Genet C Semin Med Genet 119C:19-26 |
