A kidney transplant for children today compared to dialysis offers a longer life expectancy, superior growth, and improved neurocognitive development and academic performance. While these outcomes benefit their overall quality of life, these children will nonetheless navigate a future of clinical and personal challenges.
Dr. Hilda Fernandez
As a pediatric nephrologist with NewYork-Presbyterian Morgan Stanley Children’s Hospital and Interim Medical Director of the Pediatric Kidney Transplant Program, Hilda E. Fernandez, MD, is acutely aware of the myriad factors that affect the lives of pediatric transplant recipients as they transition to adulthood. In 2019, Dr. Fernandez initiated the Pediatric to Adult Transition Clinic to provide a seamless transition for continuous care from the pediatric to the adult renal service at NewYork-Presbyterian/Columbia University Irving Medical Center.
When compared to adults, pediatric transplant recipients are at an increased risk of having neurocognitive impairment, diseases related to kidney function, and a more vulnerable immune system. The singular most threatening concern is graft failure, which is a particular risk during their transition to adolescence and young adulthood. While the goal is to achieve lifelong graft function, most pediatric patients will require more than one transplant. It is also imperative to recognize and address the psychological implications for these patients, who are trying to balance living up to the normal expectations for their age, while managing a life-threatening condition.
“The entire life of an individual who receives a transplant as a child is shaped by their status as a transplant recipient.” — Clinical Journal of the American Society of Nephrology
In a review article published online in the May 2021 issue of Clinical Journal of the American Society of Nephrology, Dr. Fernandez and Bethany J. Foster, MD, a pediatric nephrologist and Pediatrician-in-Chief at McGill University Health Centre, present the characteristics that typify the course of these patients during milestone periods in their lives and make recommendations for management and support. These include:
Ongoing Health Concerns
Children who undergo kidney transplant have underlying disease that brought them to this point – such as congenital abnormalities of the kidneys and chronic urinary system disorders – requiring ongoing multidisciplinary and subspecialty care.
Behavioral and Psychological Consequences
As adolescents and adults, these children will face concerns related to becoming autonomous and taking on the responsibilities for their own care, including medications. Studies have shown adherence deteriorates during this period due not only to increasing independence but also to incomplete brain maturity. Academic progress and social development may be delayed. Self-esteem can be impacted by short stature, which is common among pediatric transplant recipients. Depression and anxiety are often present due to all of these and many related issues that put patients and their families at risk for mental health crises.
Adult Care: A Turning Point
Between the ages of 18 and 21 – coinciding with the time of greatest risk for graft failure – pediatric transplant recipients begin their transition to adult-oriented care. This is a sensitive period defined by a number of stressors, not least of which is adapting to the change from a nurturing and family-focused environment to one that encourages patient autonomy. The authors emphasize that during this phase the support of a parent or other adult caregiver will facilitate a more successful shift to and acceptance of more responsibility for managing medications, post-transplant protocols, and self-care.