Awareness of sickle cell among people of reproductive age: Dominicans and African Americans in northern Manhattan.

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.

Incomplete follow-up of hemoglobinopathy carriers identified by newborn screening despite reporting in electronic medical records.

OBJECTIVE: Has the recent availability of newborn hemoglobinopathy screening results within patient electronic medical records (EMR) of birth hospitals facilitated follow-up by primary care pediatric providers? METHODS: An online survey of all 137 primary care pediatric providers at a New York City academic medical center was conducted in 2008-2009 to assess practices for hemoglobin-apathy trait follow-up. Physicians were resurveyed 1 year later, following educational outreach and a letter of instruction underscoring the availability of screening results in the EMR. All 62 primary care pediatricians were surveyed at a nearby city hospital for comparison. RESULTS: Overall response rate for the initial survey at the teaching hospital was 58% for pediatricians (N = 57) and family physicians (N = 23), and 50% for pediatricians at the city hospital (N = 31). Despite high prevalence of hemoglobinopathies in the population served and screening results in EMRs, only 46.2% of providers surveyed at the academic center reported routinely checking results of their infant patients: 38.6% of pediatricians and 66.7% of family practitioners. Some respondents were unaware that results are available in the EMR. The proportion of providers checking screening results was not significantly affected by educational intervention (N = 40). Provision of recommended follow-up for a positive trait result was modestly improved, especially in referring families for genetic counseling (25% to 50%, p<.01). In contrast, most pediatricians (83%) at the city hospital routinely check and perform follow-up. CONCLUSION: Despite access to results in the EMR and targeted educational outreach, follow-up of hemoglobinopathy screening by primary care varies widely across clinical sites.