Transition of Pediatric Patients to Adulthood

Transition Versus Transfer

The transition from pediatric to adult-centered health care is part of the developmental process for those with chronic childhood diseases and disabilities. In discussions of transition there is often confusion between “transition” and “transfer.” The term transition refers to a complex set of beliefs, skills, and processes that facilitate the change from pediatric to adult-centered care. Transition is a multifaceted, active process that, under ideal circumstances, addresses the medical, psychosocial, and educational/vocational needs of adolescents as they prepare to move from child- to adult-centered health care. The term transfer refers to the change in provider, location of care, or both.

The transition process includes the transition of responsibility for health care tasks from the parent to the patient, as well as the preparation to transfer to adult-centered care. Transition readiness can be viewed as an adolescent’s ability to begin and complete this process with parent/family and provider support. To date there is not a universally accepted definition of a “successful” transition or transfer. Studies have focused on medical stability and attendance at the first scheduled clinic appointment in the adult center as markers of a positive transition process. Indeed, an important outcome of the transition process is the actual transfer to a new health care setting, provider, or both. Yet the transfer of care is only one outcome and does not mark the end of the transition process, which should continue in the adult clinic as the adolescent/young adult continues to work toward mastering his or her health care management.

Developmental Aspects of Transition

Adolescence and emerging adulthood are unique developmental periods characterized by changes in biological, psychological, and social roles. The adolescent developmental period is characterized by change and transition in cognitions, emotional attachments, physical development, independence, education/vocation, and self-identity. Adolescence is a critical period for the establishment of both positive and risky lifelong health-related behaviors. The developmental characteristics associated with adolescence, including developing autonomy from family, assimilating with peers and separating from parents, poorly developed abstract thinking and understanding of long-term consequences of present actions, are often difficult to balance with the behaviors required for the management of a chronic disease condition. Emerging adulthood is the period between the ages of 18 and 25 and is conceptualized as a separate unique period of life that includes (1) identity exploration, (2) instability, (3) self-focus, (4) feeling in between, and (5) possibilities. Developmental achievements during this period include the ability to accept responsibility for the consequences of one’s actions, to make independent decisions, and to become financially independent. The planning and implementation of transition programs for adolescents and emerging adults must consider the developmental achievements of these groups.

In practice, chronological age is the most common criterion used to determine one’s readiness to transfer from pediatric to adult-centered health care. Unfortunately, young adults who underwent liver transplantation in childhood are at risk for delayed autonomy and medication nonadherence for many reasons. This risk has significant implications for pediatric providers, given recommendations that adolescents acquire self-management skills before the transfer to adult-centered health care. Consideration of self-management skills is critical in evaluating the timing for transferring patient care from pediatric to adult clinics. A shared management model describes a developmentally appropriate and systematic approach to the gradual shifting of self-management responsibilities from the parent to the adolescent. By reallocating responsibility for health-management tasks in a developmentally appropriate manner, the adolescent has the opportunity to obtain the knowledge, skills, and experiences necessary to master the independence required to be successful in the adult health care system.

Based on the shared management model, during the early transition phase (ages 10 to 12 years), the parent is the “manager” of health care responsibilities and encourages the child’s participation in self-management tasks. The young adolescent should be able to perform greater self-care tasks with parental supervision, while increasing understanding of his or her transplant condition and medications. The parent provides tools to foster the child’s acquisition of self-management skills and observes the young adolescent’s performance and remains involved in care, decision making, and monitoring. In the middle transition phase (ages 13 to 15 years), the adolescent becomes the primary “manager” of daily health care tasks, and the parent serves as a “supervisor” of health care responsibilities. The adolescent begins to develop strategies to complete self-management tasks and develops knowledge of treatment requirements and complications prevention. In this period it is the parent’s responsibility to negotiate the allocation of responsibility for health care tasks, introduce topics related to sexuality, drug/alcohol use, vocational/educational goals, and insurance issues.

Lastly, during the late transition phase (ages 16 years and older), the adolescent is the primary manager, while the parent’s role shifts to one of “consultant.” In this period the adolescent masters the ability to describe his or her transplant condition and the implications of transplantation for overall health and sexuality and demonstrates an ability to independently access care and manage medications. The adolescent should be able to communicate independently with health care providers, describe medical insurance coverage, and demonstrate engagement in vocational/educational training or integration into the work force. During the late transition phase, the adolescent expresses a readiness to transfer care from the pediatric to the adult clinic. As a consultant, the parent remains available to the adolescent for support and problem solving, provides encouragement and guidance, and encourages vocational/educational goals.

In the late transition phase the adolescent/young adult eventually transfers his or her transplant care from a pediatric to an adult-centered health care setting. It is imperative that this final stage of transition preparation target modifiable factors related to the acquisition of the skills necessary for independent health management ( Fig. 73-1 ).