Approximately 1 in 5 US families has a 6- to 21-year-old with a chronic illness. With advances in medicine that have improved the outcome for children with chronic illnesses, 90% of youth with special healthcare needs of a physical nature will enter adulthood, numbering one-half million annually. In addition to physical conditions, there are an estimated 600,000 16- to 17-year-olds in the United States with a serious mental illness. In fact, a number of chronic and severe mental health diagnoses (eg, schizophrenia, anxiety, eating disorders) present most often during this transition age period.
Healthcare transition (HCT) is defined as the purposeful planned movement of adolescents and young adults with chronic conditions from child-centered to adult-oriented healthcare systems. The American Academy of Pediatrics 2002 consensus statement identified multiple deficiencies in HCT, including youth and young adults with special healthcare needs (YYASHCN) not prepared for HCT; pediatric healthcare providers not prepared to assist in transition readiness for YYASHCN and their families; an adult healthcare system not adequately prepared to receive young adults with special healthcare needs; and inadequate communication between the subspecialty and medical home providers. As a result, increased morbidity and mortality have been reported in the post-transition period if the transition is poorly managed; those with complex conditions and neurocognitive disabilities tend to do worse. A single-center longitudinal cohort of children with sickle cell disease with 940 participants followed for 8857 patient-years demonstrated that the majority of deaths occurred after 18 years of age and transfer to adult care, with a mean of 1.2 years to death after transfer. In a group of adolescents and young adults with moderate to complex congenital heart disease, lapses in care of ≥2 years between the last pediatric and the first adult congenital heart disease visit occurred in 63% of patients, and were associated with a new, hemodynamically significant diagnosis at the time of their first adult congenital heart disease clinic visit. Moreover, increased morbidity and emergency department use as a result of foregone care during the transition from pediatric to adult healthcare have likely contributed to increased healthcare costs. These data indicate that HCT represents both a vulnerable period and clear opportunity to alter the trajectory of health outcomes.
Despite increased attention to the importance of HCT from pediatric to adult-based care, including the recognition by numerous professional medical organizations (eg, American Heart Association, American Academy of Pediatrics, American Diabetes Association) as to the need for comprehensive transition planning, progress in addressing these barriers has been slow and a strong evidence base is lacking. This chapter provides guidelines on how to initiate transition planning and how to build a transition planning program for YYASHCN. (Chapter 124 addresses HCT for medically complex patients, including those with a developmental disability.)
It is helpful to think of HCT as occurring in three phases: transition preparation, active transfer between pediatric ...