Despite the recent availability of safe, accurate methods for the prenatal diagnosis of sickle cell disease and Cooley's anemia, the majority of children with hemoglobinopathies in the United States are born to unsuspecting parents. The purpose of this continuing project is to ascertain the receptivity of pregnant women to unsolicited identification as hemoglobinopathy carriers. The principal measure of receptivity used is whether the pregnant carrier acts on the information provided to determine whether her fetus is at risk by referring her mate for carrier testing. Fourteen centers in Rochester, NY are submitting blood samples for testing on all prenatal patients on their first visit. In the first 34 months of the study, 61% of women made a special trip to receive counseling, 81% of counseled carriers wanted their mates tested, 59% of mates were actually tested, and 69% of couples found to be at risk who were offered prenatal diagnosis chose it. Seventy-two percent of first prenatal visits of carriers occurred in time for prenatal diagnosis. The costs of this program are less than the costs of medical care for the estimated cases of hemoglobinopathies averted. Since the majority of pregnant women act on information when given by tertiary providers, can counseling by primary providers be shown to be equally effective? Objectives of the current proposal are (1) to train the primary providers of obstetrical care to provide their own carrier patients with appropriate genetic counseling, (2) to compare counseling by the primary providers with counseling by the present tertiary providers (the applicants), and (3) to identify requirements for successful primary provider counseling by determining the attributes of effective and ineffective primary provider counselors. To achieve these aims, we propose to (1) survey provider attitudes, (2) enroll all consenting providers in the county, (3) train providers or their designated staff members in genetic counseling and followup of hemoglobinopathy carriers, (4) collect the data necessary to evaluate each provider or provider group on the basis of percent of positive patients counseled, test scores for comprehension after counseling, and percentage of counselees referring mates for testing, (5) compare results of primary provider counseling with results of tertiary provider counseling for each of these outcome and (6) identify predictors of effective provider performance, including number of prenatal patients per year, staff/M.D. ratio, prepaid vs. fee-for-service, percent Medicaid patients, percent black patients, years in practice, prior participation in this program, use of videotapes, and counselor attitudes. The information gained from this project can help to provide couples who are at risk for a child with a serious hemoglobinopathy the services they need through their own physician.
