CARRIER SCREENING FOR CYSTIC-FIBROSIS - TEST ACCEPTANCE AND ONE-YEAR FOLLOW-UP

We identified 124 carriers among 4,879 patients of prenatal care provi ders in the Rochester region. Six factors were identified that togethe r permitted a correct classification regarding test acceptance for 77. 5% of all subjects. For those pregnant, the most influential of these factors was a more accepting attitude toward abortion. As an indicatio n for abortion, cystic fibrosis (CF) ranked between mild and moderate mental retardation. Of the 124 carrier women identified, we obtained 1 -year follow-up information on 100. Mean score for CF knowledge at 1 y ear (77.4 +/- 13.2%), although significantly lower than immediately af ter counseling (84 +/- 12.4%), was still significantly higher than aft er detection but before counseling (51.1% +/- 20.7%). Anxiety about ha ving a child with CF significantly declined from 25.8 +/- 8.0 SD immed iately after counseling to 18.9 +/- 7.8 at 1 year (Spielberger State A nxiety Scale). Although 15 carriers regretted having been tested, 83% believed that they benefited from testing, 83% would make the same dec ision to be tested over again, and 79% would recommend testing to a fr iend. We conclude that, for most women, CF carrier screening accomplis hed its purpose: most carriers detected came for counseling, had their partners tested, and, if their partners were also carriers, had prena tal diagnosis. The major undesirable outcomes were that many women tes ting negative did not understand that a negative result did not exclud e being a carrier and that three women found to be carriers did not ha ve their partners tested because of anxiety or the unacceptability of pregnancy termination and therefore may not have carefully considered their decision to be tested. Both of these undesirable outcomes could have been avoided by greater attention to pretest patient education by the primary care provider. (C) 1997 Wiley-Liss, Inc.