INVOLVING CONSUMERS IN THE DEVELOPMENT OF AN EDUCATIONAL-PROGRAM FOR CYSTIC-FIBROSIS CARRIER SCREENING

Input from consumers of health care was sought in developing an educat ional program to be provided to individuals who are considering carrie r testing for cystic fibrosis (CF). In addition, we assessed the abili ty of health professionals to predict consumers' priorities with regar d to such information. A focus group of six middle school teachers for mulated questions that they would ask in trying to decide whether they wanted carrier screening for CF. Then, other adults with (n = 39) and without (n = 60) a family history of CF were presented with the quest ions and were asked to select the questions in the order in which they would want them answered if offered the carrier test. After each ques tion was answered, they were asked whether they would want the carrier test if it were offered to them. CF clinic staff, clinical geneticist s, and genetic counselors (n = 31) were asked to select the questions in the order in which they believed that an adult from the general pop ulation would want them answered. There were no differences in the ord er in which adults with and without a family history of CF would want questions answered. Consumers would want to learn about the carrier te st as well as their risk of being a carrier and of having a child with CF, before receiving information on reproductive options and the effe ct that a child with CF would have on the family. Of the 44% of consum ers who changed their mind about wanting screening during the course o f selecting questions, 52% did so after the first question that they s elected. Most (82%) of those who changed their decision switched from not wanting to wanting screening. As a group, professionals were not a ble to predict the preferences of consumers; for three of the six ques tions, the mean order selected by geneticists differed from that selec ted by the consumers. These findings suggest that the needs of consume rs of health care will be more adequately met if they are involved in the preparation of educational materials.