The Implementation of Cognitive Screening and Educational Support to Improve Outcomes of Adolescents and Young Adults with Sickle Cell Disease: From Clinic to the Community and Back

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Project Summary/Abstract Policies that address factors such as education could have a bigger influence on health than all medical advances combined. Within the U.S., adults without a high school diploma are likely to die nine years sooner than college graduates. Our team showed that a 15-year-old male with sickle cell anemia who comes from a low-income family has a 70% risk of failing a grade in school, putting him at risk of becoming a dropout. High school students who fail even one course are 33% more likely to drop out of high school. These statistics are a stark reality for the 100,000 Americans who have sickle cell disease (SCD), a chronic hemolytic anemia that causes organ damage and early death. Over 90% of this population is African American, 60-70% are living at or near poverty, and they suffer from a chronic disease associated with a high risk of central nervous system (CNS) injury. Medical advances such as penicillin prophylaxis, transcranial Doppler screening with prophylactic chronic transfusion and hydroxyurea reduce the risk of death. Despite these advances, median survival of individuals with SCD remains just 30-40 years, 30-45 years less than the average life expectancy for African Americans. Our multidisciplinary team addresses cognitive function and educational attainment to improve overall health of people with SCD. A child with sickle cell anemia, a silent cerebral infarct, and a parent without a high school education is predicted to have a full-scale IQ 13 points (SD = 15) lower than a child with no silent infarct and a college-educated parent. The 2014 Evidence Based Management guidelines from NHLBI stated, “Silent CNS infarcts can present with non-focal signs such as developmental delays or poor or declining school performance in children or changes in social role or work functioning in adults. Throughout their lives, people with SCD should be considered for formal neurocognitive evaluation when assessments reveal any of these concerns.” We hypothesize that better implementation of these recommended cognitive evaluations and translation to well-defined plans for educational support in schools will increase students’ success in educational attainment and promote better health. The long-term goal of this application is to improve the health and academic attainment of adolescents and adults with SCD by implementing evidence based guidelines for neurocognitive testing and intervention. In response to the Sickle Cell Disease Implementation Consortium RFA, we propose the following aims: 1) To complete a community-based needs assessment of the facilitators and barriers to essential healthcare and optimal educational attainment for adolescents and adults with SCD and their caregivers; 2) To design and implement a novel implementation project based on our previous work that focuses on cognitive evaluation and educational attainment of higher risk adolescents with SCD; 3) To participate in the development of a SCD Registry in collaboration with the Data Coordinating Center and NHLBI. Together, our aims will establish that our site is able to improve health and well-being of adolescents and adults with SCD in through the development of multi-modal, multi-sector interventions aimed at improving the rate at which patients with SCD receive evidence-based care.