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 Studies have reported a knowledge gap Studies have reported a knowledge gap among adolescent and young adult heart heart transplant patients upon transitioning to adult cardiology practices.

 This population is vulnerable to life-threatening complications as they progress to adult care.


We assess the current knowledge deficit of our adolescent and young adult patients and their caregivers in order to inform pediatric providers of their unique needs as they prepare to transition.

Heart transplant patients >10 yrs and their caregivers completed a written questionnaire prior to a clinic visit. 17 questions were asked including the need for transplant, medication names, purposes and adverse effects and the effects of living with a transplanted heart on exercise and work choices.

Patients were all transplanted in another facility and initial education occurred at that facility.


Genetic factors and exercise/work limitations were the most misunderstood.

Our patients and caregivers also lacked a clear understanding of medications and common and/or serious adverse effects.

Areas that were well understood included: why the transplant was needed, meaning of immunosuppression, and the need for lifelong follow-up.

Recently our facility was granted permission to perform heart transplants and it will be our responsibility to initially and fully educate the patient and caregivers. A comprehensive team including a pharmacist, dietician, genetic counselor, and psychologist, in addition to nurses and physicians has been formed and they will be knowledgeable of ongoing needs with the intent to close the knowledge gap.


Cardiology | Pediatrics | Pharmacy and Pharmaceutical Sciences


Presented at the 18th annual Update in Pediatric and Congenital Cardiovascular Disease; February 2015; Scottsdale, AZ

Knowledge Gap in Adolescent Heart Transplant Recipients