Optimizing Quality of Life in Children with Complex Congenital Heart Disease

Abstract

Abstract Purpose of Review Individuals with congenital heart disease (CHD) can experience long-term morbidities related to physical, neurodevelopmental, and psychosocial functioning. These long-term sequelae are more likely to occur for patients who meet the high-risk criteria and are associated with diminished health related quality of life (HRQOL). Understanding how to mitigate risk or intervene to improve physical, neurodevelopmental, and psychosocial outcomes for patients with CHD is critical for improving HRQOL. Recent Findings Instruments measuring HRQOL are available and widely used in children with CHD. Lower HRQOL is associated with greater disease complexity and medical care utilization, lower self-perception and competency, more behavioral and emotional difficulties, and greater educational impairment. Interventions like family-centered neurodevelopmental care, early intervention, psychological and behavioral services, physical activity, educational services, and family support have been shown to positively impact physical, neurodevelopmental, and psychosocial outcomes for patients with CHD, but it is unclear what interventions in these domains will specifically improve HRQOL. Summary There is a critical need for research focused on interventions to improve neurodevelopmental, psychosocial, and physical functioning in children with CHD. Intervention research needs to be high quality, use appropriate instruments, and should examine the impact of these interventions on HRQOL in both the short- and long-term.