Transition Readiness and Health Literacy in Adolescents/emerging Adults with Sickle Cell Disease

Abstract

Approximately 90,000 Americans, primarily African American, are affected by sickle cell disease (SCD). With medical advancements allowing youth with SCD to have increased longevity and survive well into adulthood, adequate preparation in overall disease management is necessary to facilitate a successful transition from pediatric to adult health care. Research has shown that health literacy affects health outcomes (e.g., factors related to disease management) and patients with SCD possess multiple characteristics found to be associated with low health literacy. Thus, it is important to investigate the effects health literacy has on the transition experience of youth with SCD so that we can optimize the chances of a successful transition to adult care. The purpose of this study was to examine transition readiness and health literacy among adolescent and emerging adult patients with SCD and to examine the cross-sectional relationship between health literacy and transition readiness within the SCD population. Results from this study found that patients with SCD had similar self-reported transition readiness relative to other chronic illness populations; similar healthy literacy to overall healthy peers and significantly higher health literacy than healthy Black peers. Assessed health literacy performance was not significantly associated with transition readiness. Finally, patients who had already transferred to adult care had significantly higher transition readiness skills than patients still receiving pediatric care. Future research should examine other methods of assessing health literacy in this population as well as potential variables affecting SCD patients' ability to manage their disease before and after transitioning to adult care.