Transplantation has become standard of care for end-stage organ disease from chronic conditions, acute organ failure, and genetic/metabolic conditions. Transfer of care from pediatric to adult transplant providers is a period of significant vulnerability for the AYA. To ensure that transplant recipients maintain healthy outcomes and can achieve their full potential, a process of transition education should be initiated during early adolescence with the goals of educating the patient and caregivers about transplant care. The AYAs and caregivers should be provided with information about their care through various transplant educational materials, resources, and transition tools.
General knowledge about their transplant
To the best of their developmental and cognitive ability, the AYA should be able to:
Name their indication for transplant and state whether it is a congenital or acquired disease.
Generally explain how/why their underlying disease led to end stage organ dysfunction and the need for transplant.
List any risks that may remain because of their underlying disease process.
List additional comorbid health conditions and allergies.
State the date of their transplant and where they received their transplant.
Have access to a list of their transplant team providers and contact information.
Additionally, AYAs can collaborate with their pediatric team to write a medical summary during transition of care and update the form routinely in preparation for transfer to adult providers.
Sample Medical Summary and Emergency Care Plan (gottransition.org)
Transplant knowledge: Rejection
Discuss why obtaining routine labs is an important part of their routine care.
Demonstrate understanding that good adherence supports graft health.
List symptoms of rejection.
Discuss how rejection is diagnosed and treated.
Discuss the outcome of rejection with an understanding that rejection is usually treatable and that baseline graft function returns after successful treatment.
Transplant knowledge: Post-transplant care
Post-transplant care varies based on the graft type, time post-transplant, comorbidities, adherence, and the AYA’s ability to manage their healthcare with increasing independence. The AYA should have a general understanding of the elements of their post-transplant care routine to maintain their transplant health and optimal graft function. Each content area should be discussed based on center policy and transplant care guidelines.
Routine laboratory tests
Helps assess organ function, rejection, routine health
Monitored to follow immunosuppressive medication levels and maintain a consistent trough level based on risks for rejection, infection, and side effects
Lab frequency varies due to the length of time post-transplant and risks
Infection surveillance
The AYA will be monitored for transplant-related infections (CMV, EBV, BKV, adeno) and other infections based on their infection risk. The patient should understand that when immunosuppression levels are high, they are at greater risk of infection.
The AYA should be aware that their vaccination record will be reviewed at least annually. Recommendations will be provided for vaccine scheduling.
Nutrition and hydration
General guidelines for healthy nutrition and weight maintenance should be followed.
The AYA should have an understanding that hydration is important for kidney health, particularly due to potential nephrotoxicity from some immunosuppressive medications.
Transplant care routines
Maintain an updated medication list and take all medications as prescribed.
Attend transplant clinic as requested.
Complete requested tests and procedures as requested (biopsies, ultrasounds, endoscopies)
Communicate routinely with your transplant coordinator through the patient portal, phone, or email.
Long-term healthcare monitoring
Establish care with primary care physician (PCP), dentist, OB/GYNE, vision care specialist
Bone health
Skin care
Dental health
Vision screening
Nutrition and weight management
Activity and exercise
Reproductive health care
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