title: Comparing knowledge of beta-thalassemia in samples of Italians, Italian-Americans, and non-Italian-Americans.
abstract: The purpose of this study was to determine the level of beta-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 beta-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 beta-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 beta-thalassemia compared to only 19% of the Italian-Americans. beta-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.
authors.affiliation: Department of Genetic Counseling, Arcadia University, Glenside, Pennsylvania, USA.
authors.forename: Christina
authors.initials: C
authors.lastname: Armeli
authors.forename: Steven J
authors.initials: SJ
authors.lastname: Robbins
authors.forename: Deborah
authors.initials: D
authors.lastname: Eunpu
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D004314:Down Syndrome / Q000453:epidemiology; D005260:Female; D005820:Genetic Testing / Q000379:methods; D006801:Humans; D007558:Italy / Q000208:ethnology; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D014481:United States / Q000453:epidemiology; D017086:beta-Thalassemia / Q000453:epidemiology / Q000208:ethnology* / Q000235:genetics