The Transition of a Pediatric Kidney Transplant Recipient from Childhood to Adult Care

Introduction

Moving from pediatric to adult care occurs during one of the most emotionally vulnerable periods of a young person’s life, the late teens to early twenties, a time when serious risk-taking and impulsivity peak (1,2). Under the best circumstances, emotional brain development and executive functions are not fully mature until the mid to late twenties (1). Young adults with childhood-onset kidney failure are especially vulnerable because their psychosocial milestones are often delayed, making it a challenge to meet the expectations and responsibilities of adult life (3). Kidney allograft loss peaks in 17- to 26-year-old patients, regardless of the age at which transplant occurred (4).

Transition to adult care is a process that begins in childhood and ends once the patient is fully integrated into adult care, whereas transfer is a single point in time. Using clinical vignettes, this article illustrates the transition process for a kidney transplant recipient during successive periods of her life. The aim is to provide pediatric and adult nephrology professionals with insights into some of the hurdles young patients with transplants face, challenges for those caring for them, and strategies to assist them in their transition journey.

Fictional Patient

Amy, a 17-year-old kidney transplant recipient, was diagnosed with kidney failure in infancy. At 3 weeks of age, she began peritoneal dialysis, and at 18 months, she received a living donor kidney. With a well-functioning transplant, she attended day care and primary school and participated in extracurricular activities. Summer kidney camp gave her opportunities to engage with peers having similar experiences, develop friendships, and have greater autonomy.

At age 13, she was diagnosed with Crohn's disease, necessitating several hospitalizations. This was a setback for her physical and psychologic health, middle/high school attendance, and social development. She is cofollowed by pediatric gastroenterology and receives regular infliximab infusions. Her current transplant immunosuppression includes tacrolimus, mycophenolic acid, and prednisone, with reported excellent adherence. For the last 5 years, her creatinine has been 0.9–1.0 mg/dl.

When Should We Begin to Prepare a Patient Like Amy for Transition to Adult Care?

Transition preparation should begin early, as described in the Transition of Leadership model (Figure 1) (5). Our pediatric nephrology team would start working with Amy’s family in early childhood to help them envisage her future as an independent adult and foster developmentally appropriate self-care. We would encourage them to treat her, as much as possible, like a healthy child with normal family responsibilities, social opportunities, and schooling (2).

Figure 1.

Transition of Leadership for health care responsibility from parent to child, adolescent, and young adult with a kidney transplant. In the Pretransition years, the parent, as Chief Executive Officer (CEO), provides all care but fosters a sense of participation, responsibility, and self-efficacy early in their child's life. The child incorporates health care habits into their daily routine, takes part within their developmental ability, is given choices where appropriate, and learns the name of their condition and important symptoms. During Early Transition, as the child acquires experience and ability, the parent transfers responsibility for carefully articulated skill-appropriate tasks. The parent becomes Manager and the child the Provider. During the Middle and Late Transition periods, as the teen develops competence in self-management, they and their parent negotiate the next two phases, first with parent as Supervisor and teen as Manager and provider of specific tasks, then with parent as Consultant and teen as Supervisor and provider of most care. During Young Adult–Focused Care, the adolescent/young adult becomes CEO, with the parent readily available as Consultant. Throughout all stages, the parent remains present to offer additional support in times of stress, illness, or other life complications. Progression through each stage is adapted to the patient's cognitive capabilities, physical skills, and developmental level. The interdisciplinary pediatric nephrology team (nephrologists, nurses, nutritionist, social worker, and, as needed, psychologist, child-life workers, and psychiatrist) works with the patient and family throughout this process. The box at the bottom of the figure provides examples of topics/ tasks/ responsibilities at successive phases. Explicit examples of child and parent roles at each developmental stage, as related to CKD and transplantation, are described in ref. 2, table 4. Figure adapted from ref. 6, with permission.

How Might Amy’s Kidney Disease and Complications Affect Her Future Transition?

Children with CKD are at risk for lower academic achievement than their healthy peers (6,7). Contributing factors include neurocognitive problems, particularly associated with advanced kidney failure and dialysis in infancy, and missing school. Education is a significant social determinant of health, especially for the future well-being of an adolescent/young adult with a serious chronic disease. Therefore, it is important to address academic challenges early. Childhood and adolescent/young adult transplant recipients are also at higher risk for executive function deficits that may affect their medication adherence (8). Because of Amy’s early-onset kidney failure and school challenges, neuropsychologic testing was done. It showed impairments in executive functioning that could affect both her academic success and treatment adherence. Therefore, support and remediation strategies were implemented.

What Transition Preparation Should We Do in a Patient’s Teenage Years?

When Amy is 14 years of age, we would begin to see her, without her parents, in our Transition Preparation Clinic (Figure 1). A pediatric nephrologist, a nurse, a social worker, and an adolescent medicine specialist participate in the clinic, and a psychologist is available if needed. Topics, geared to age and developmental level, include disease and medication knowledge, when and how to seek urgent medical attention, adherence barriers and facilitators, school and career counseling, mental health, sexuality, and healthy lifestyle. Amy’s parents would meet the nephrology nurse separately for coaching on helping her attain progressive transition milestones. Visits to the transition preparation clinic generally occur yearly and include transition readiness assessments and transplant clinic visits.

Additional Clinical History: Destabilization and Mitigation

Over the last 9 months, Amy has missed several blood test appointments; her previously stable tacrolimus levels have ranged from <2 to 9 ng/ml, without dosage change, and she has seemed less engaged in the clinic. Her most recent laboratory results showed a significant creatinine increase and a new, very high, class 2 donor-specific antibody. Urgent allograft biopsy revealed antibody-mediated rejection.

In 4 months, Amy will turn 18, our hospital’s and the government’s mandated age of transfer to adult care. Our plan had been to transition Amy to our Young Adult Kidney Transplant Clinic (Figure 1) just prior to her 18th birthday. In this clinic for 18- to 25-year-old patients, pediatric and adult nephrologists and nurses work together as a team in an adult model of care (9). Because guidelines recommend avoiding transfer during periods of instability (2), we would negotiate an extension of pediatric care with our hospital. Because treatment for antibody-mediated rejection could be protracted and continue after Amy’s transfer, we would discuss our treatment protocols with our adult colleagues to develop a harmonized approach and avoid unexpected treatment changes. Other concerns are Amy’s recent nonadherence and behavior changes, possibly signs of mental or emotional distress; prior to transfer, we would explore this further and asked our psychologist to help.

How Can We Facilitate Amy’s Transfer?

Clear verbal and written communication among all stakeholders is fundamental (9). The pediatric transplant team needs to prepare a succinct transfer summary, including all relevant medical/surgical history, a transition readiness assessment, and pertinent psychosocial issues, and provide Amy with her own portable medical summary. Coordination of transfer with the gastroenterology service and her family doctor will be needed (9). We will arrange a meeting for Amy with her new adult health care team and set up an orientation tour of the new site prior to transfer. Written and electronic information about how the Young Adult Kidney Transplant Clinic functions during the daytime and after hours will be given.

What Supports Are Needed after Transfer to Promote Successful Transition?

Foundations for success in young adulthood include physical health, psychologic well-being, healthy family and social relationships, educational attainment, and constructive educational-occupational engagement (10). These may be challenging for adolescents/young adults with childhood-onset kidney failure; they may often need more structured support than those whose kidney disease begins in young adulthood.

Adolescent/young adult patients with transplants, especially those with early-onset kidney failure, are at risk for impairments in neurocognition and executive functioning, such as working memory, attention, and processing speed; they may need additional help to understand treatment plans and process and retain information (7,8). They could have difficulty with planning and organizing, problem-solving, and good decision making, all of which might adversely affect treatment adherence (8). A young adult kidney transplant clinic can provide scaffolding for graduated integration into adult services, longer visit times, more frequent adherence assessments and supports (6), and extra psychosocial help during the vulnerable young adult years. The goal is to facilitate eventual independent functioning in the regular adult transplant clinic.

In the United States, where transfer to adult care often occurs during a patient’s early twenties, some of these challenges may be mitigated. Nonetheless, national guidelines recommend an adult model of care starting from age 18 years even in pediatric sites (9) and extra support and flexibility in both the pediatric and adult settings for those with complex medical conditions and/or psychosocial/developmental challenges.

Summary

Transition is a longitudinal process beginning in childhood and continuing through early adulthood. For transplant recipients, young adulthood is the period of highest graft loss risk. Contributing factors include delays in psychosocial milestones, academic challenges, and impairments in executive functions in addition to the normal age-related vulnerability of the young adult years. Extra support in adult care for this vulnerable group is essential to help them successfully navigate their journey. Building an effective transition program is not done overnight; it begins with small steps that progressively lead toward the defined goal, with repeated cycles of reflection, analysis, and improvement (9).

Disclosures

The author has nothing to disclose.

Funding

None.

Author Contributions

L.E. Bell conceptualized the case study, wrote the original draft, and reviewed and edited the manuscript.