Purpose of review: Unequivocal conclusions regarding the quality of life (QOL) of children, adolescents, and young adults with heart disease cannot be drawn because results vary across studies and between patient and parent-proxy reports. This review focuses on the recent studies that help us understand this variability and why subgroups of young cardiac patients do appear at increased risk of impaired QOL.
Recent findings: The age at which QOL is assessed might contribute to variability in reported QOL outcomes, with the greatest QOL impairment tending to occur with the youngest patients. Adolescents and young adults with heart disease often report positive QOL outcomes. Recent studies have furthered our understanding of the determinants of impaired QOL, including low social support, emotional instability, developmental disabilities, poorer subjective health status, and lower exercise capacity. Certain cardiac treatments, such as transplantation and implantable cardioverter defibrillator implantation, warrant special attention for potential QOL impairment.
Summary: Future research should move beyond cross-sectional studies and include longitudinal assessment of QOL. In addition, given the success with extending the lives of young patients with cardiac conditions, it is important that strategies focused on patient and family QOL are also advanced.