Comparing knowledge of β-thalassemia in samples of Italians, Italian-Americans, and non-Italian-Americans

Abstract

The purpose of this study was to determine the level of β-thalassemia awareness among Italians living on the eastern side of Sicily (Bronte, Catania, and Tortorici, Messina), Italian-Americans, and Americans of other ethnic backgrounds (Other-Americans). A questionnaire was developed which asked respondents knowledge questions about both β-thalassemia and Down Syndrome. Five hundred questionnaires were distributed, and 456 were ultimately returned and analyzed (150 Italians, 156 Italian-Americans, 150 Other-Americans). Italians answered an average of 55% of the β-thalassemia correctly compared to scores of 17 and 24% for the Italian-Americans and Other-Americans, respectively. The groups did not differ in their knowledge of Down Syndrome (all answered between 58 and 60% of the questions correctly on average). Over 80% of the Italian respondents had heard of β-thalassemia compared to only 19% of the Italian-Americans. β-Thalassemia education programs in Italy appear to have dramatically increased awareness of the disorder. Similar programs need to be developed for at-risk populations in the United States. © 2005 National Society of Genetic Counselors, Inc.