Children born today with congenital heart disease (CHD) are likely to reach adulthood, even those with complex disease. As survival rates have increased, attention has focused on the longer-term morbidity associated with CHD and its treatment, but this has largely addressed the physical and physiological outcomes rather than psychosocial morbidity and health-related quality of life (QoL). The purpose of this article is to outline the arguments in favor of routine evaluation of health-related QoL, describe how such measurements might be used, and the barriers and challenges associated with the collection of the data. Finally, a strategy is suggested for the routine collection and use of health-related QoL data with children and adolescents with CHD.
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