Pediatric heart transplantation is a life-saving treatment, yet is associated with life-long medical follow-up. For parents of heart transplant recipients, the burden of complex care can disrupt family roles and routines and exacerbate existing stress. Poor parental health-related quality of life and family functioning can negatively affect the child’s transplant prognosis.
Aim: This cross-sectional study assessed the association between pediatric heart transplantation and parents’ health-related quality of life and family functioning according to the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module.
Methods: Parents of heart transplant recipients completed the PedsQL Family Impact Module. Family demographics, including marital status and familial children, and patient medical information, including sex, diagnosis, age at transplant, time since transplant and post-transplant complications, were collected.
Results: The sample comprised 108 parents of 79 heart transplant recipients. A pronounced negative impact was observed in the subscale of worry (mean 52.94 ± 21.89). Higher (positive) total impact scores were significantly associated with age at transplant, time since transplant, and additional familial children.
Conclusions: Findings support clinical recommendations to assist parents throughout the pediatric heart transplantation trajectory.
Knowledge Translation: Parental Health-Related Quality of Life and Family Functioning Following Pediatric Heart Transplantation. Andrews K, Selkirk E, Lin J, Anthony SJ. Canadian Journal of Cardiology, 2022;1-4.
Family Impact Infographic