Quality of life in congenital heart disease

Abstract

Quality of life in congenital heart diseaseHeroic operations are routinely offered in industrialised countries for children with severe congenital heart lesions. Parents need to know the outcome to make informed decisions about surgery. A systematic review of health-related quality of life (HRQOL) found 20 studies involving 3808 children and young adult patients with surgical congenital heart disease and 2951 parental reports. 1 Cardiac defects were grouped into simple, moderate and complex. HRQOL was worse compared to healthy controls in all domains, with the largest differences in physical functioning and psychosocial functioning. Cardiac-related HRQOL post-surgery was significantly worse in complex compared with simple congenital heart disease, particularly in terms of symptoms and cognitive function. Parents were most concerned about their children's psychosocial and emotional functioning, communication and cardiac symptoms, while patients' concerns were with physical and social functioning. The systematic review did not look at family dysfunction, including marital breakdown. All the studies were in high-income countries. This study provides valuable information for families and their medical practitioners to consider prior to surgery.