Transition and Transfer from Pediatric to Adult Care of the Young Adult with Complex Congenital Heart Disease
Section snippets
Definition of transition and transfer
Transition of care, as referred to in this article, is the process by which adolescents and young adults who have chronic childhood illnesses are prepared to take charge of their lives and their health in adulthood. It is an educational process that ideally begins before children reach adolescence and continues until they are capable of taking full responsibility for their care. Most importantly, young patients who have complex congenital heart disease are taught that, although they have the
A brief history of transition
Health care transition for young people who have chronic health conditions has long been recommended [1], [2], [3]. In the United States, multiple invitational conferences and task forces have identified the problems faced by the growing population of adults who had chronic childhood illnesses and their need for formal transition programs. In 2003, the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians presented a consensus statement on
Goals of the transition process
Few would argue with the appropriateness of and benefits associated with preparing young people to take charge of their own health and lives. Nevertheless, the smooth transition to this state remains a challenge for everyone involved. With this challenge in mind, formal structured transition programs have been proposed [5], [6], [22], [23], [24]. The goals of such programs are several. First and foremost, they aim to provide uninterrupted health care that is patient centered, age and
Transition needs of adults who have congenital heart disease
Adolescents who have congenital heart disease constitute a growing population of individuals who have such complex medical issues that a well-planned and well-executed transition process can be valuable. Because of advances in pediatric cardiovascular surgery, percutaneous interventional therapies, intensive care, and medical management, many children who have complex congenital heart disease are now surviving into adulthood. As a result, the number of adults who have congenital heart disease
Models of transition
A variety of transition models have been proposed, including generic and disease-based models, and transition recommendations have been elaborated and published. The generic transition model employs adolescent medicine services to run generic transition programs designed to address general adolescent and transition issues while relying on subspecialty programs to handle specific medical issues. The disease-based model carries out the transition process within a program that specializes in the
Key elements of transition
Regardless of the model, fundamental principles of transition have achieved nearly universal endorsement [6], [19], [23]. These principles provide a framework for individual programs and institutions whose goal is to improve the transition experience for their young adult patients who have chronic health conditions. The following discussion outlines what the authors believe are the key elements that must be incorporated into a transition program. These key elements begin with patient
Obstacles to transfer of care
Although many barriers exist to the successful transfer of congenital heart patients out of pediatric cardiac care, only a few young adults who have complex congenital heart problems continue to receive care from their pediatric cardiologists. Currently, the majority of adults who have congenital heart disease experience unplanned transfer without transition; they discontinue care with their pediatric team at some point in adolescence or young adulthood and later transfer to an adult health
The timing of transfer
Ideally, transfer of care from a pediatric to an adult health care system occurs at the successful completion of a thoughtful transition process. When deciding on the timing of transfer, two important points need to be considered. First, there should be a policy on timing to ensure that transition and transfer actually occur and occur in a predictable manner [23]. Second, despite the policy on timing, a transition program must be flexible and should tailor the transfer process and its timing to
Adult provider services
Although the needs of some patients are relatively straightforward, other patients have complex needs and may require the involvement of a variety of consultants, including an electrophysiologist, psychiatrist, obstetrician, gynecologist, gastroenterologist, hepatologist, nephrologist, pulmonologist, neurologist, or oncologist. Other medical and nonmedical professionals, including midlevel providers, social workers, and those who specialize in vocational and educational issues, are also
Coordinated transfer process
A coordinated transfer process is the final component of a successful transition process [17], [22], [23]. As the time for transfer approaches, preparations need to be made to ensure the process goes smoothly. By now, the patients and their families have been prepared through the transition program and are ready for the transfer of care. A carefully prepared health summary allows seamless transfer of care and provides a blueprint for the new health care team, especially early after transfer. A
Summary
Because increasing numbers of young people who have complex congenital illnesses are surviving into adulthood, there is an urgent need for programs designed to facilitate their smooth movement from pediatric to adult health care environments. This article has identified the important constituents of the transition process and has provided guidelines to the successful transfer of the patient to the adult health care environment. In the near future, it is hoped, transition programs will become
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