Health-Related Quality of Life in Adolescents and Young Adults with Heart Failure

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<h3>Purpose</h3> In adult heart failure populations, health-related quality of life (HRQOL) is predictive of changes in health status and outcomes including mortality and hospitalization. Despite a growing population of pediatric and young adult patients with heart failure, HRQOL in this population has not been well described. This study aimed to describe self- and proxy-reported HRQOL in adolescents and young adults (AYA) with heart failure. <h3>Methods</h3> AYAs (12-24 years) with heart failure or a significant post-heart transplant complication and a caregiver were enrolled at a single center. AYA/parent dyads completed a self- or proxy-reported version of the PedsQL 4.0 Generic Core. Group comparisons based on primary cardiac diagnosis leading to heart failure were conducted. Patient demographic and disease characteristics were examined as correlates of HRQOL. <h3>Results</h3> 53 patient-caregiver dyads participated. Patients were 64% male; 76% White. Post-transplant with life threatening complication (26%), single ventricle heart disease (SVHD) (23%), anthracycline induced cardiomyopathy (21%) and dilated cardiomyopathy (DCM) (17%) were the most common diagnoses. Disease burden was high with 42% experiencing extra-cardiac disease and 34% having >11 hospitalizations. AYAs with transplant complications, SVHD, and DCM and their caregivers endorsed significantly impaired total HRQOL when compared to population norms. Conversely, AYAs with anthracycline cardiomyopathy and their caregivers reported normative HRQOL that was significantly better than the other diagnostic groups (p=0.04). Across all diagnostic groups, female sex (p=0.01) and white race (p=0.01) were associated with poorer physical functioning HRQOL. <h3>Conclusion</h3> Many AYAs with heart failure and their caregivers report impaired HRQOL, however certain cardiac diagnoses and demographic groups were associated with better reported HRQOL. Further studies are needed to understand mediators of risk for poor HRQOL in this population, as well as the role of potential resiliency focused interventions to improve HRQOL.