We identified 124 carriers among 4,879 patients of prenatal care providers in the Rochester region.
Six factors were identified that together 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 indication 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 year (77.4 ± 13.2%), although significantly lower than immediately after counseling (84 ± 12.4%), was still significantly higher than after detection but before counseling (51.1% ± 20.7%). Anxiety about having a child with CF significantly declined from 25.8 ± 8.0 SD immediately after counseling to 18.9 ± 7.8 at 1 year (Spielberger State Anxiety Scale).
Although 15 carriers regretted having been tested, 83% believed that they benefited from testing, 83% would make the same decision to be tested over again, and 79% would recommend testing to a friend.
We conclude that, for most women, CF carrier screening accomplished its purpose : most carriers detected came for counseling, had their partners tested, and, if their partners were also carriers, had prenatal diagnosis. (...)
Mots-clés Pascal : Mucoviscidose, Dépistage, Porteur, Prénatal, Diagnostic, Epidémiologie, Intérêt, Hétérozygotie, Acceptation, Appareil respiratoire pathologie, Appareil digestif pathologie, Pancréas pathologie, Maladie héréditaire, Métabolisme pathologie
Mots-clés Pascal anglais : Cystic fibrosis, Medical screening, Carrier, Prenatal, Diagnosis, Epidemiology, Interest, Heterozygosity, Acceptance, Respiratory disease, Digestive diseases, Pancreatic disease, Genetic disease, Metabolic diseases
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Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 98-0064154
Code Inist : 002B23A. Création : 14/05/1998.