[Quality of life after pediatric heart transplantation]

The first pediatric heart transplant was performed more than 25 years ago. The results, in terms of mortality and morbidity, have gradually improved over the years, and quality of life and development are thus becoming increasingly important issues. Functional capacity is considered excellent by most recipients: 90% have few if any symptoms. Objective exercise capacity is usually subnormal, however, mainly owing to the inability of the heart rate to increase with exercise. Early cardiac rehabilitation should be encouraged in order to optimize the capacity for physical activity. Recipients can be expected to have neurodevelopmental outcomes in the low-to-normal range, with a 10- to 15-point deficit compared with normal children. Global cognitive abilities and school performance can be affected, particularly in mathematics. Moreover, 20% to 30% of these patients have behavioral and psychological disorders, which are relatively stable over time. Neurodevelopmental outcome is poorer in patients grafted because of a congenital heart defect and is consistent with that of other children with complex congenital heart diseases requiring surgical intervention. This suggests that these problems may be related more to the underlying heart disease than to transplantation itself. Neurodevelopmental outcome is better in families with good intellectual and socioeconomic status. A global, multidisciplinary approach is needed to manage these problems, both early after transplantation and later during follow-up, particularly during the transition from childhood and adulthood.