Into Adulthood: Assessing Parental Perceptions and Concerns for Pediatric Heart Transplant Recipients Around the Transition Into Adult Care

Pediatric Transplantation. Parents of pediatric heart transplant (HTx) recipients have a unique perspective on the challenges associated with the transition into adult care networks. This study assessed parental perceptions of the challenges pediatric HTx recipients face daily and parental concerns around the transition from pediatric care networks. A 15-item online survey was developed in partnership with parent-stakeholders and administered to parents of pediatric HTx recipients in September 2023. While parents reported mostly positive quality of life outcomes for their children (75% rated overall QoL 8 or higher out of 10), they identified ongoing concerns spanning infectious diseases, health behaviors and care management, transplant-related concerns, socialization and education, mental health, and care coordination, both day to day and around the transition into adulthood. Co-authored with the NYU Langone Transplant Institute team.