Heart transplant patients have complex healthcare needs, and this can be particularly true of the youngest of these patients. A well-supported transition to primary care in the community is critical to successfully managing these patients’ conditions. The risk of organ rejection is highest in the first 6 months after pediatric heart transplant, according to Rebecca Ameduri, MD, Medical Director of the Pediatric Heart Failure and Transplant Program, University of Minnesota Masonic Children’s Hospital. To help primary care providers reduce that risk, the hospital’s heart transplant specialists deliver resources and in-person education right to primary care providers’ office doorstep.
Most pediatricians will have only 1 or 2 heart transplant patients in their entire career. Thus, direct communication between the transplant team cardiologist and the primary care physician is critical. Clinician education programs have also been shown to bolster nursing staff’s confidence in working with transplant patients.1 Established in 2010, the Primary Care Education Program aims to support pediatric heart transplant patients’ care and initiate collaboration between the transplant and primary care teams, a partnership that will continue throughout these patients’ lives. Ameduri and 2 pediatric heart failure and transplant care coordinators—Amy Hanson, RN, BSN, CNOR, and Alison Wohlhuter, RN, BSN, CCTC—staff the program.
The program includes a presentation on pediatric heart transplant, medications, and specific concerns following transplant. Led by Ameduri or a program coordinator, these presentations are delivered at the primary care facility and include physicians, triage nurses, lab staff and any other clinicians who may care for the patient. Program presenters tailor the talk to the specific needs of the individual child being delivered to primary care. A manual with information on the patient’s medications, follow-up care, and other treatment needs is provided to the staff.
A Young Patient Returns to Primary Care
For one young patient, post-transplant care included special attention to nutrition and progress in growth and development. The 6-month-old female patient was discharged and transitioned to her pediatrician’s care 2 weeks after undergoing a heart transplant at University of Minnesota Masonic Children’s Hospital. Before birth, she was diagnosed with pulmonary atresia/intact ventricular septum and right ventricle-dependent coronary circulation. This lesion is associated with a high risk of sudden death; therefore, palliative surgery was not an option, and the patient was listed for transplant. During the 5-month wait for transplant, her complications included recurrent thrush, PICC line infections, and necrotizing enterocolitis.
Upon discharge from the hospital, the patient had mild thrush, was feeding by mouth poorly, and required nasogastric supplemental feedings. She was on 14 different medications. As part of the patient’s transition to primary care, the Primary Care Education Program coordinators traveled to the patient’s primary care facility to deliver a presentation to the team and to consult with the patient’s pediatrician. Dr. Ameduri, who served on the patient’s transplant team, provided an overview of developments in pediatric heart transplant, current options for bridging patients to transplantation, and special concerns in pediatric post-transplant care. Medication management is of particular concern. Medications for young heart transplant patients include prophylactic antibiotics, statins, antihypertensives, diuretics, and immunosuppressants. Because of their impact on the child’s immune system, careful management of the patient’s childhood immunizations as well as family members’ immunizations becomes extremely important.
For this patient, in addition to monitoring for signs of organ rejection, her follow-up required monitoring of nutritional needs and the establishment of routine well-child care. Ameduri noted these specific needs in the presentation and again in individual discussions with the patient’s pediatrician.
Ameduri and Wohlhuter also made a similar presentation to emergency department staff at the ED nearest the patient’s home. The patient continues to be followed by heart transplant team members.
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