Kidney transplantation is the standard of care for children and adolescents with end-stage kidney disease (ESKD). Over the past half century, significant advances in the medical and surgical management of children with ESKD has led to the increasing prevalence of pediatric kidney transplantation, and children with chronic kidney disease who survive into adulthood. These young adults will require transfer to adult care, typically between 16 and 21 years of age, which is right in the middle of the highest risk period for allograft failure [1]. The concurrence of this high-risk period for allograft failure and age of transfer may not be merely coincidental.
Transfer of care from pediatric to adult-oriented care involves changing providers and healthcare settings, a known contributor to adverse outcomes [2, 3]. Additionally, adult-oriented care models significantly differ from pediatric-oriented care, and may not be conducive to supporting the needs of the young adult, further increasing the risk of adverse outcomes. The pediatric care setting is often better resourced to allow for a more nurturing and family-focused approach, allowing healthcare professionals to spend more time with each patient encounter. In contrast, adult care focuses on the patient as an individual and emphasizes patient autonomy, potentially leading to the misconception of lack of availability or interest from the perspective of the young adult patient. Furthermore, other factors such as loss of or changes in medical and prescription medication coverage may contribute to the negative impact on the young adult's care [4]. All of these changes occur during a vulnerable period of an adolescent's life when there is increased risk-taking behaviour and when emotional brain development and executive functions are not fully matured, which all impact decision-making and medication adherence [5]. Adolescents and young adults with childhood-onset chronic kidney disease are especially vulnerable as they are often impacted by delayed psychosocial development that impairs their ability to meet the expectations and responsibilities of adult life. All of these factors likely contribute to the increased risk of allograft failure after the transfer to adult care as compared with the time before transfer of care [6], highlighting the need for a structured well-designed transition program that ensures the successful integration of young adults with kidney transplants into adult specialist care [7, 8].
In this issue, a systematic review by Wildes et al. highlights the paucity of transitional care models specifically addressing the needs of adolescents and young adults with kidney transplants [9]. Their work identified 12 articles that describe transitional care models specific to kidney transplant recipients with significant heterogeneity in practices. The mean age when transitional care was initiated was 13.4 years (range 10–17.5 years), and mean age when care was transferred to adult services was 18.3 years (range 16–20.5 years). While all models utilize a multi-disciplinary team, including either a pediatric nephrologist or clinical nurse specialists, the involvement of other allied health professionals was more variable. Of particular interest was the finding that only 7 of 12 (58%) models included an adult nephrologist, 1 of 12 (8%) a clinical pharmacist and none a general practitioner/family medicine physician. The inclusion of an adult nephrologist and transplant coordinator is associated with improved adherence and outcomes post-transfer [10, 11], likely due to a number of factors. Patients can meet with adult center team members for the first time in the presence of pediatric team members with whom they are familiar, possibly reducing fear and apprehension. The inclusion of the adult team also likely improves communication with their pediatric counterparts and facilitates the development of expertise in the adult team looking after these young adult kidney transplant recipients, ultimately translating to improved continuity of care. General practitioners/family medicine physicians play an important role in the care of patients with chronic diseases as they are often the only constant in the patient's care, and play the role of ‘quarterbacks’ that coordinate the provision of care between multiple different specialty teams [12]. Clinical pharmacists provide vital education around the management of the complex medical regimens that transplant patients use.
Transition of care refers to the purposeful and planned process of moving an adolescent with chronic medical condition from pediatric to adult care services which should begin in adolescence and continue into early adulthood [13], while transfer is a one-time event during this process when the responsibility for care formally shifts from a pediatric to an adult team. The International Society of Nephrology and the International Pediatric Nephrology Association published a consensus statement in 2011, outlining the approach to transitioning pediatric patients with kidney diseases to adult services [8]. While a variety of transitional care models exist, there is some evidence to support the success of a structured transition program delivered through well-designed transition clinics, in improving patient outcomes and satisfaction [10, 11, 14, 15].
Transition planning should ideally begin in early adolescence (as early as 12 years of age), with gradual transfer of responsibility for self-management skills from the parent(s) to the patient. This transition plan should be individualized to the specific adolescent patient's needs. Part of this process is to assess the adolescent's readiness for the eventual transfer and to address any identified barriers to adherence and/or a successful transition. The involvement of a multidisciplinary team is helpful, including the pediatric transplant physician, nurse specialists, nurse, adolescent medicine specialist, social worker, clinical pharmacist, dietitian and psychologist. Well in advance of the transfer, it is important that an adult nephrology/kidney transplant team with expertise in caring for young adults with kidney transplants is identified. Ideally, having a joint pediatric and adult transition/transfer clinic where both pediatric and adult kidney transplant teams participate can facilitate discussions around evidence-based approaches relevant to the care of the adolescent; assessment of transition milestones reached and identification of key deficits/issues that require ongoing follow-up; and to ensure that appropriate follow-up with the young adult team has been arranged upon transfer of care. Whenever feasible, the young adult's general practitioner/family medicine physician should be engaged in the transition process. They are well positioned to support the young adult patient and their families through the transition to adult care but may sometimes feel insufficiently prepared or resourced to provide the level of care required for young adults with kidney transplant, who may have complex needs. Their engagement in the transition process is not only helpful for the continuity of care for the patient, but facilitates specialized transition education, training and capacity building among primary care providers (Fig. 1).
A proposed framework of the process of transition of care. Transition planning should ideally be initiated in early adolescence (as early as 12 years) with gradual empowerment of the adolescent with self-management skills and responsibilities. The skills that need to be developed and barriers need to be identified and addressed, with frequent assessment of attainment of goals/milestones. A multidisciplinary approach is important with engagement of the receiving adult transplant team and primary care providers. Ideally, this can be provided within a joint pediatric–adult kidney transplant transition clinic with the eventual transfer of care to a young adult kidney transplant clinic, where ongoing integration of the young adult into the adult care model can be supported. It is important that the transfer of care should occur when the adolescent is ready and during a window of medical stability.
Successful transition ensures that care is uninterrupted, coordinated and adapted to the individual young adult's needs, while maintaining (if not improving) disease control, quality of life and social functioning throughout young adulthood. To increase the likelihood of a successful eventual transfer, it is pivotal that the transfer of care takes place during a time of stability, rather than during a time of crisis. Flexible funding/reimbursement models on both sides of the pediatric–adult healthcare divide to allow for some flexibility in timing of transfer based on the individual's readiness, rather than a mandated age cut-off, will go a long way to facilitate success and improved outcomes post-transfer. Additionally, establishing standardized, evidence-based quality indicators will allow us to track longitudinal changes, evaluate and benchmark across programs and highlight areas for improvement. The findings of this study by Wildes et al. should act as a call to action for us—healthcare providers for adolescents and young adults living with kidney transplants—to ensure that their healthcare needs are met during and beyond transition to enable them to reach their full potential.
CONFLICT OF INTEREST STATEMENT
The authors have no conflict of interest related to this manuscript.
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