Transitioning adolescents to adult care and adulthood: Is it time yet?

CASE 1: In a recent visit with a 17-year-old patient you follow closely for asthma, you learn that he is looking for a job after high school. He asks if he can continue to see you.

CASE 2: You have been the primary care provider for an 18-year-old patient with Down syndrome and congenital heart disease for many years. Her mother tells you that the pediatric subspecialists wish for her to be seen by adult providers now. You wonder if it is time to transition to primary care, and consider future planning issues.

These are but 2 examples of adolescent and young adult patients who need help with the process of transitioning to adult care, in which patients are more responsible for their own healthcare. The move from adolescence to adulthood involves transitioning through multiple interrelated systems, including healthcare, educational, and social services. This 2-part article provides an overview of healthcare transition concepts and the rationale for focusing on healthcare transition (Part 1) and discusses the role of the healthcare provider, including checklists and resources that can be used to help adolescents and young adults transition to adulthood (Part 2).

Transition, as defined by Blum and colleagues, is "the purposeful, planned movement of adolescents and young adults with chronic illness/disability from child-centered to adult-oriented systems (health, occupation, residence)."¹ A consensus statement from the American Academy of Pediatrics (AAP), the American Academy of Family Physicians, and the American College of Physicians–American Society of Internal Medicine states that the goal of transition for all youth with or without special healthcare needs is "to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate healthcare services that continue uninterrupted as the individual moves from adolescence to adulthood."²

This goal also applies to other aspects of transition, including educational, social, and economic, which requires planning and preparation. Transition is not an event or sudden transfer of care but a process that occurs over time and is part of normal, healthy development.

Rationale

The transition to adulthood and adult care can be especially challenging for children and youth with special healthcare needs (CYSHCN). The Maternal and Child Health Bureau (MCHB) defines CYSHCN as those patients "who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."^1,3 According to the MCHB definition, this includes children with allergies, asthma, and attention-deficit/hyperactivity disorder (ADHD), as well as those with cerebral palsy, Down syndrome, muscular dystrophy, cystic fibrosis, and sickle cell disease; approximately 10.2 million children (13.9%) aged 0 to 17 years in the United States fit this definition.³ Other prevalence estimates of CYSHCN range from 10% to 19% across the United States.^4-6

Individuals with disabilities and complex health conditions are living longer because medical advances keep them healthy, thus shifting the healthcare focus from quantity to quality of life. Yet, as a group, young adults with disabilities are poorer, have lower educational attainment, and are much less likely to be employed than their nondisabled peers.⁷

Young adults with chronic illnesses frequently are dependent on their parents and other adults, contributing to decreased independence as adults.⁷ CYSHCN are less likely than other teenagers to receive appropriate preventive services, including reproductive healthcare, and anticipatory guidance addressing high-risk behaviors.⁸ Young adults (aged 18 to 24 years) are more likely than any other age group to be uninsured or underinsured, with more adverse consequences for those with special healthcare needs.^9,10 Other challenges include difficulty locating adult primary care providers, children's hospitals with upper age limits, and lack of adult specialists trained to care for individuals with childhood-onset conditions.¹¹

A study of young adults who had received services through state Title V programs demonstrated that 24% of patients lacked a usual source of care for their main condition and 27% had gone without some needed medical care since they had turned 21 years of age.⁸ As a result, young adults with chronic conditions without a usual source of care and health insurance have higher rates of emergency department utilization and poorer health outcomes than children with similar conditions who have a usual source of care and health insurance.⁴