Discordance Between Caregiver and Transplant Clinician Priorities Regarding Post-Heart Transplant Education

Patient and caregiver education following pediatric heart transplant (HTx) is a cornerstone of post-HTx care. Despite the importance of post-HTx education, there are no standardized guidelines for topics and content. Education practices vary across clinicians and centers. Patient and caregiver priorities regarding post-HTx education are unknown. This national survey study aimed to characterize adolescent HTx recipient, caregiver, and clinician values specific to post-HTx educational topics.

A cross-sectional, national electronic survey was performed. Eligible participants included pediatric HTx recipients between the ages of 13-18, adult caregivers of pediatric HTx recipients, and pediatric HTx clinicians. An investigator-designed survey was developed to assess the importance of 20 educational topics. Average scores on educational topics were compared between HTx recipients/caregivers and HTx clinicians using two-sample t-tests.

120 survey responses were included, with a majority completed by HTx caregivers (N = 73; 61%) and clinicians (N = 43; 36%). Of the 20 educational topics assessed, there was a significant difference (p < 0.05) between educational values of HTx recipients/caregivers compared to HTx clinicians for 40% (N = 8) of the topics. For each educational topic that revealed a significant difference, HTx recipients/caregivers consistently placed greater value on the educational topic compared to HTx clinicians.

Priorities regarding post-HTx education do not always align between HTx recipients/caregivers and HTx clinicians. Results suggest that HTx recipients/caregivers place higher value on educational topics regarding daily life after HTx compared to HTx clinicians. We hope these findings better inform the approach to post-HTx education and care for future pediatric HTx patients.