Over the last quarter century, there have been dramatic improvements in survival of children with serious health conditions, including those with solid organ transplants and they are becoming adults in ever increasing numbers. There are close to 1500 late adolescent/young adult solid organ recipients with at least 5-year graft survival in the United States alone, the majority having received a kidney (Table 1, Organ Procurement and Transplantation Network (OPTN) data as of July 11, 2008).
|Organ||Number functioning/alive||Survival rate||95% Confidence interval|
Coping with organ transplantation during emerging adulthood is challenging. This is a tumultuous period of life for many youth, regardless of physical health. The mortality rate of all 18–24-year olds is more than twice that of those aged 12–17. Substance use and abuse peaks, and the suicide rate is triple that of adolescents (12–17 years) (1) The burden of a serious health condition is an additional stress. Young adult and adolescent renal transplant recipients have the highest rates of acute rejection, death censored graft loss and chronic rejection leading to graft loss (2,3). Up to a third of all adolescent transplant recipients may be non-adherent (4). Normal adolescent tendencies of questioning or rejection of authority may predispose them to spurn previously accepted medical advice and treatment. Preoccupation with body image and the adverse cosmetic effects of some immunosuppressive drugs collide. Many other factors may contribute, among them impulsivity and risk taking, which appear to be, at least in part, biologically driven (5,6). Structural and functional brain imaging show significant maturational changes continue into the early twenties. The regions last to mature are associated with ‘executive brain functions’, such as foresight, planning, evaluation of risk and reward, and the capacity to dissociate decision making and strong emotion (5–7).
As pediatric transplant recipients reach this vulnerable age, health professionals are challenged to effectively facilitate their transition from adolescent to adult care. It is broadly acknowledged that (i) there is a general need to improve the transition process; (ii) many youth are ill-equipped to receive care in the adult system; (iii) adult providers may lack knowledge and skills to care for young adults with childhood-onset chronic conditions and (iv) inadequate health insurance and transition services funding negatively impact patient outcome (3,8–11).
Through the initiative of the Pediatric Committee of the American Society of Transplantation, a jointly sponsored international consensus conference on ‘Adolescent Transition to Adult Care in Solid Organ Transplantation’ was held to address these diverse challenges. Five workgroups focused on the following broad and inter-related themes: tasks and challenges for the pediatric and adult transplant teams, integration into the adult world: vocational, educational and primary/preventive health care matters, system issues and ethics. This report is a synthesis of the expert opinions and recommendations of all the participants, and based on current state of the knowledge. Some of these recommendations may not be specific to solid organ transplantation, or necessarily novel. However, recognition of transition issues has been slower in the transplant community than with several other chronic conditions and this report is meant to highlight transition issues for the adolescent and young adult transplant population. The writers of this paper were presenters of data and/or workgroup leaders. A complete list of attendees is provided in the appendix.