Outcomes of Congenital Heart Disease: A Review

Angela Green

Disclosures

Pediatr Nurs. 2004;30(4) 

In This Article

Abstract and Introduction

One million Americans are affected by congenital heart disease (CHD) (American Heart Association [AHA], 2003). As survival has improved, evidence has accumulated that CHD touches many aspects of the lives of those affected. Children and adults report difficulties with physical growth and/or stature. Gross motor abnormalities are common in both groups, and significantly reduced exercise tolerance is reported in adults with CHD, including those with minor defects. Behavioral and psychiatric abnormalities are reported in adolescents and young adults, including a significant incidence of depression and anxiety disorders. The data are conflicting regarding quality of life (QOL) in children and adults with CHD. More research is needed examining outcomes, particularly outcomes of those diagnosed, managed, and repaired using modern technology.

Eight in 1,000 newborns are diagnosed with congenital heart disease (CHD), and present estimates indicate that 1,000,000 Americans are living with CHD (American Heart Association [AHA], 2003). As survival has improved, evidence has accumulated that CHD touches many aspects of the lives of those affected. Children and adults report difficulties with physical growth and/or stature. Gross motor abnormalities are common in both groups, and significantly reduced exercise tolerance is reported in adults with CHD, including those with minor defects. Behavioral and psychiatric abnormalities are reported in adolescents and young adults, including a significant incidence of depression and anxiety disorders. The data are conflicting regarding quality of life (QOL) in children and adults with CHD. More research is needed examining outcomes, particularly outcomes of those diagnosed, managed, and repaired using modern technology. Survival in children with CHD has greatly improved in the decades following the first attempts at surgical intervention. QOL was the initial focus of outcomes research in this population, but as survival has improved, other outcomes have received attention. Still, very little research has examined QOL in survivors of CHD. This paper presents a critical review of outcomes in CHD focusing on research published in the past 5 years. Survival data are examined first followed by research on cardiac, neurodevelopmental, cognitive, behavioral, psychiatric, and social morbidity. Outcomes in education, employment, marriage, and reproduction will also be reviewed. Finally, reports of QOL of survivors of CHD will be examined.

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