Quality of Life in Patients with Operated Congenital Heart Disease

A significant proportion of survivors of operated patients with congenital heart disease (CHD) are at risk for psychological maladjustment and impaired health-related quality of life (QoL). Advances in surgical and postoperative care have significantly reduced the mortality and improve mid- and long-term cardiac outcome even for children with complex CHD. Increasing attention is now being given to the long-term general outcomes and QoL for children after cardiac surgery. These include neurodevelopment, social performance, and health-related quality of life (HRQoL). The assessment of HRQoL in patients with CHD is challenging because of the variability in age, neurodevelopmental capabilities, and diagnoses. QoL is a multidimensional construct integrating an individual s subjective perceptions of physical, social, emotional and cognitive functioning. Traditionally QoL in cardiac patients has been estimated by objective indices related to health outcomes such as cardiopulmonary exercise capacity, exercise tolerance, or the New York Heart Association classification. However, there is a general agreement that these indices alone do not suffice to reflect QoL in these patients. The assessment of psychological adjustment incorporates a range of outcome measures including behavioral, emotional or psychosocial constructs. A common approach differentiates between internalizing and externalizing behavior difficulties. The former are characterized by symptoms of anxiety, depression, and withdrawal, while the latter include delinquent, aggressive, and show off behavior. Due to lack of clear relationships between exercise capacity, physical activity, and QoL, it is recommend to assess QoL separately, preferably both self-reported and parent-reported. Since depressive symptoms were associated with reduced physical and psychosocial QoL, screening of these symptoms is also recommended.