Abstract
Sickle cell disease is a chronic condition that is characterized by severe anemia, painful crises, and organ dysfunction. In the U.S.A., sickle cell is a health burden typically associated with African Americans. Dominicans constitute the largest Latino group in New York City (N.Y.C.) and have the second overall highest prevalence of sickle trait-one in 20 births, compared to one in 12 African American births. We aimed to document the prevalence of sickle within the largely Dominican and African American community of Northern Manhattan (Washington Heights, Inwood, Harlem), assess and compare knowledge about sickle disease and carrier status in young adults of reproductive age between African Americans and Dominicans, and elicit preferred sources of health information. N.Y. State Newborn Screening data in Northern Manhattan were analyzed by zip code. A brief oral survey was administered to 208 parents of young children-150 Dominicans and 58 African Americans. Significant differences were seen in knowledge about sickle-27% of Dominican parents surveyed correctly defined sickle cell disease as an inherited blood disorder, compared to 76% of African Americans (p < 0.001). Only 7% of African Americans did not know their own trait status, compared to 43% of Dominicans (p < 0.001). Parents were better informed if they or family members were affected by sickle conditions. Participants from both groups prefer receiving information from doctors and online. A separate group of 168 predominantly Dominican youth, ages 14-24, demonstrated knowledge levels similar to that of Dominican parents. These results suggest that many of reproductive age in a N.Y.C. community affected by sickle conditions frequently lack basic relevant information, with larger information gaps among Dominicans. Expanded efforts are warranted to inform young adults of diverse affected communities.