Decreasing Health Disparities: Data and Analytics of Patient Experiences and Health Outcomes in Rural Youth with Sickle Cell Disease.

Brief description for etracs: We are interested in how rural youth with sickle cell disease and their families experience Medicaid managed care and how it affects their health outcomes. We plan to measure this through both personal experiences (e.g., focus groups, Photovoice methods, advisory panel) and medical system chart reviews. We believe this project aligns well with KBR's goal in this funding announcement to "conduct community-based evaluation, research, and planning that engages residents in the process to collect data, identify gaps, and determine best practices to leverage payment reforms and value-based care implementation to narrow systemic racial and ethnic inequities in health outcomes." We will work with youth with sickle cell disease in 29 eastern North Carolina counties. Our project will address how healthcare reform is impacting the health outcomes (e.g., medication adherence, utilization of acute care services, outpatient clinic visit attendance, patient-reported disease control, and health-related quality of life) of racial and geographic minoritized youth with sickle cell disease.

VIVO