656 Do You See What I See?: Comparing Child and Parent-Proxy Reported Health-Related Quality of Life and Wellbeing Among People With a Fontan Circulation

Abstract

Living with a Fontan circulation carries potential psychosocial challenges. We sought to compare the perceptions of health-related quality of life (HRQOL) and psychological outcomes between individuals with a Fontan circulation, their parents and siblings. Families from the ANZ Fontan Registry were recruited to complete a series of self- and proxy-reported assessments. 170 families were recruited. 73 parent-child dyads (mean child age 17±9.7yrs, 46% female) completed the PedsQL Core and Cardiac Modules. 45 parent-child dyads completed the Spence Children’s Anxiety Scale (mean child age 10±2.7yrs, 48% female). Parents reported significantly lower overall HRQOL (p<0.05), as well as poorer psychosocial outcomes (p<0.01) and greater cognitive difficulties (p<0.05), for their child with a Fontan circulation compared to their child’s self-report. Self- and parent-proxy reported scores were lower across all HRQOL domains when compared to the general population (all p<0.01). Conversely, children and adolescents reported greater symptoms of anxiety compared to parent-proxy reports (p<0.01), though parents still rated their child with a Fontan circulation as having greater symptoms of anxiety and lower HRQOL compared to their closest age sibling (p<0.001). Parents perceive their child with a Fontan circulation as experiencing lower HRQOL compared to their child’s own report; however, children report greater symptoms of anxiety than parent-proxy reports. Our findings suggest considerable discrepancies among self- and parent-proxy reported psychosocial outcomes. Approaches to research and clinical care which engage the perspectives of both parent and child are needed to form a comprehensive understanding of health and well-being among Fontan patients.