TABLE 1

Youth, Young Adult, and Family Transition27,28,37,59,6384

Fear of a new health care system and/or hospital
 Not wanting to leave their pediatric clinician and pediatric institution
 Anxiety about how to relinquish control around managing their youth condition
 Anxiety of not knowing the adult clinicians, adult health care system, and logistical issues (ie, finding parking, making appointments, finding a physician who is taking new patients, inadequate transferring patient records, and insurance issues)
 Changing and/or different therapies recommended in adult health care
 Families’ fear that adult clinicians will not listen to and value their expertise
 Negative beliefs about adult health care
Inadequate planning
 Inadequate preparation and support from clinicians on the transition process and adult model of care
 Not having seen clinician alone
 Youth and young adults less interested in health compared with broader life circumstances
 Adolescents’ age, sex, and race and/or ethnicity and their parents’ socioeconomic status can affect transition preparation
System difficulties
 Lack of communication and coordination and transfer of medical records between adult and pediatric clinician or system
 Limited availability of adult primary and specialty clinicians
 Difficulty in locating adult clinicians who have specialized knowledge about and community resources for youth with pediatric-onset chronic diseases
 Loss of insurance coverage among young adults and cost of care barriers