The transition to adult health care for youth with special health care needs: do racial and ethnic disparities exist?

Abstract

Although the transition to adulthood for youth with special health care needs (YSHCN) has been gathering attention, the impact of racial and ethnic disparities on this process has been relatively unexamined. In this review, we explore evidence of disparities in the transition to adulthood for YSHCN, which is important because the problems that YSHCN face in transitioning to adulthood are, in large part, caused by interrupted access to high-quality health care and minority YSHCN and adults have many well-described gaps in access to quality care. Understanding the disparities in the transition process is essential to ensure that interventions designed to improve this transition will meet the needs of this high-risk population. We reviewed research on transition preparation and outcomes for YSHCN to find evidence of racial and ethnic disparities. The results of our review indicate that few YSHCN are receiving adequate transition preparation, and some evidence indicates that this situation is worse for racial and ethnic minorities. Furthermore, young adults, including YSHCN, have poorer access to care than children. Moreover, at some ages, this age-related decline in access is worse for Hispanic and black young adults than for others. Finally, low-income YSHCN are at higher risk than other YSHCN of experiencing gaps in access to care as they age into adulthood. Possible causes of racial and ethnic disparities in health care transitions are related to insurance, living in low-income communities, and sociocultural factors. Significant efforts in research, policy change, advocacy, and education of providers and families are needed to ensure optimal transition preparation and adult outcomes for YSHCN from all racial and ethnic backgrounds.