Doctor of Philosophy
Sickle cell disease (SCD) is a genetic disorder that causes acute and chronic complications throughout the lifespan with morbidity and mortality increasing in young adulthood. Health care transition is important to promote continuous care throughout young adulthood. The aim of this dissertation was to inform transition programs for young adults with SCD by assessing survival among adolescents and young adults (AYA), analyzing an interruption period between pediatric and adult care, and evaluating a transition program for its effect on retention in adult care. The objective was to better inform health care transition protocols to improve overall wellness in young adults.In the first aim, the mortality of AYA with SCD born in West Tennessee from 19932019 was assessed. The probability of surviving into adulthood (i.e., greater than 18 years) was greater than 0.97. In the second aim, the effect of an interruption of care between pediatric and adult care was evaluated for its effect on health care utilization in adult care. Two sites were included in this analysis: Methodist Comprehensive Sickle Cell Center (Methodist) and Duke Sickle Cell Center (Duke). Among patients at Methodist, those with a longer interruption experienced increased rates of acute healthcare encounters in the first two years of adult care compared to those with a shorter interruption period; however, the opposite association was observed among patients at Duke. In the third aim, a healthcare transition program focused on continuity of care was evaluated for its effect on adult care retention. Those who participated in the transition program had 1.94 times the odds of being retained in adult care after 24 months compared to those who did not participate in the program (95%CI: 1.01, 3.70).As nearly all SCD patients are now surviving into adulthood, it is important to have protocols in place that support a successful transition to adult care. Two measures for successful transition might include a reduced interruption period between pediatric and adult care and improved retention in adult care. These factors indicate that patients receive consistent care throughout young adulthood, which might maintain or improve health.
Dissertation or thesis originally submitted to ProQuest
Howell, Kristen E., "Health care transition: How adolescent survival, interruption of care, and continuity of care can inform health care transition programs for young adults with sickle cell disease" (2021). Electronic Theses and Dissertations. 2912.