Transition from Pediatric to Adult Healthcare Services for Young Adults with Chronic Illnesses: The Special Case of Human Immunodeficiency Virus Infection

Abstract

The term ‘‘healthcare transition’’ refers to the purposeful, planned movement of adolescents and young adults with chronic medical conditions from childcentered to adult-oriented healthcare systems. 1 Implicitly embedded in this term is the belief that transition should be uninterrupted, comprehensive, integrated, and developmentally appropriate. 2 All young adults eventually must make this move, sometimes after receiving interim care in an adolescent program or a pediatric practice that provides expert care to teenagers and college students, but for those with serious physical and emotional disabilities, the process is complex and often delayed. In particular, youth who were infected with human immunodeficiency virus (HIV) perinatally are beset with some of the most complicated life challenges, and for them the process of transition from pediatric and adolescent to adult medicine practices is daunting, one that requires a response by their healthcare providers (HCPs) that is skillful but time-consuming. In 1989, the US Surgeon General, C. Everett Koop, convened a national conference with the Maternal and Child Health Bureau (MCHB) to address the issues of transition for youth with special healthcare needs (YSHCN). The conferees, including HCPs caring for youth with chronic conditions, were asked to examine approaches for providing smooth passage and better communication between HCPs as these youth moved from child-centered to adultcentered care. A number of legislative initiatives emerged from this conference, including Omnibus Budget Reconciliation Act 1989, which emphasized that YSHCN must receive support from maternal and child health agencies tasked with implementing family-centered, community-based, comprehensive, coordinated care focused on the total continuum of needs of mothers and children, including adolescents. 3 In the late 1990s, it was estimated that >4 million children in the United States had chronic conditions that affected them daily. 4 Thus, the MCHB has made the implementation of transition services a core performance outcome for community-based systems of care for YSHCN. The Individuals with Disabilities Education Act also requires that students with disabilities, by age 14 years, must be the recipients of case-managed school transitional services that are integral to their individualized educational plans. 5 However, in a 2005 national survey of YSHCN and their guardians, only approximately half had talked with their HCPs about their healthcare needs and the adult providers who might accept their transfer, and only 15% of YSHCN met the MCHB outcome measures for medical transition. 6 When discussions with providers do occur, questions are raised about health insurance and the need for the patients’ self-sufficiency. These discussions are less likely to take place with poor African-American and Latino families and with those not speaking English. 7,8 Discussions with providers were associated with older age and connection with a medical home. Ignorance and uneasiness with the mechanics of transition are impediments equally shared by the pediatricians, internists, and family physicians who form the points of contact in the transition process. HCPs feel ill-equipped to initiate discussions about issues for which they have no ‘‘scripts’’ and that they cannot resolve realistically without considerable ‘‘outside help.’’ Internists vocalize a need for better education on congenital and childhood conditions that afflict YSHCN and more comprehensive programs for a different ‘‘breed’’ of highly skilled subspecialists in the care of older adolescents and young adults (including neurologists, pulmonologists, developmentalists, etc). 9 Internists also express a need to move toward an untraditional but necessary involvement in care of adult family members and designated friends.