SCTaware: A Comprehensive Program to Increase Sickle Cell Trait Knowledge and Awareness Among Parents of Infants Identified by Newborn Screening

PROJECT SUMMARY/ABSTRACT Nearly 3 million African Americans have sickle cell trait (SCT) and are at risk of having a child with sickle cell disease (SCD), a severe and chronic blood disorder. More than 80% of these individuals do not know or understand their SCT status, despite the significant implications that SCT status can have on future reproductive decisions. Effectively educating parents of infants with SCT identified by newborn screening is critical. These parents are key to passing on knowledge about SCT and SCD to their children with SCT as they mature, and many of the parents can use this knowledge to inform their own future reproductive decisions, since these parents are also presumed to have a high prevalence of SCT. However, preliminary studies suggest that parents of infants with SCT frequently have low health literacy and baseline low SCT knowledge that may limit their capacity to achieve high and sustained knowledge with the education that is currently provided. The objectives of this proposal are to develop an engaging and effective health literacy-based program (SCTaware) that makes on-site SCT testing available for parents and to identify barriers that may prevent parents from knowing their own SCT status or from obtaining SCT testing. The central hypothesis is that SCTaware education will be feasible to implement and will result in high and sustained parental knowledge about SCT and SCD. With the successful completion of these objectives, SCTaware could be extended to parents of children with SCD, who also have low knowledge and health literacy, to enable them to make informed health decisions for their children and to increase utilization of and adherence to effective SCD therapies (e.g., hydroxyurea). This application is directly responsive to the NHLBI Limited Competition R03 program for career development awardees (RFA-HL-18-025). Thus, completion of the proposed research is expected to facilitate the development of a unique and needed resource (an effective SCD education program) that will accelerate the career progression of a successful K23 awardee toward independence as a clinical researcher. The PI will leverage this resource to successfully compete for R01 funding to determine the impact that an effective SCD education program and an innovative hydroxyurea adherence intervention have on the outcomes of children with SCD.