Targeting Transition: A Novel Partnership With Family Medicine To Enhance Quality Of Care And Outcomes For Adolescents And Young Adults With Sickle Cell Disease

Life expectancy for adults with sickle cell disease (SCD) has remained unchanged over the past 30 years despite improvements in pediatric SCD care and survival. Young adults who have recently transitioned from pediatric to adult care are at increased risk of death for several reasons. Inadequate preparation for transition to adult care, lack of adult hematologists with SCD expertise, and impaired cognitive function from either overt or silent cerebral infarcts caused by SCD contribute to the increased rate of acute care encounters and deaths in the 18-35 year age group and highlight the need for well-designed transition programs for adolescents and young adults (AYAs) with SCD. Allen County ranks 3rd in SCD incidence among the 92 counties in Indiana, and has 3 board certified Pediatric Hematologist-Oncologists who provide care to children who live in the region. When children “age out” of the pediatric system, there are no adult hematologists willing to accept these individuals into their practice. This leaves a significant number of adults with SCD without a medical home or providers who are comfortable prescribing hydroxyurea (HU) or managing the myriad of SCD complications that can occur in adulthood. A novel partnership between our Pediatric and Adult Hematology practice and an Allen County Family Medicine residency program was initiated to educate Family Medicine residents and attending physicians (FPs) about SCD, including HU. The long term goal is to improve rates of successful transition from pediatric to adult care for AYAs with SCD.