Neurocognitive and psychosocial outcomes in adult congenital heart disease: a lifespan approach

Learning objectives In 1964, Glaser recognised that, ‘Despite benefits derived from these remarkable therapeutic gains, children with congenital heart disease face many difficulties in their efforts toward social and emotional adjustment.’1 In 1981, Doucet wrote, ‘The impact of congenital heart disease on the individual would not be limited to the physiological alteration in the heart’s functioning but would affect the whole individual.’2 Recognition of the broader lifestyle implications of congenital heart disease (CHD) for both children and adults is thus not a modern concept. However, what is unique to the current era of CHD care in developed countries is that over 90% of infants born with CHD survive to adulthood, with the number of adults living with CHD now far surpassing the number of children.3 This demands that we expand our definition of successful adult CHD (ACHD) outcomes to include good quality of life, including the best possible neurocognitive and psychosocial functioning, and target our clinical efforts accordingly. Although neurocognitive and psychosocial outcomes among adults with CHD are often considered independently, this silo-oriented approach ignores their reciprocal interplay. For example, neurocognitive, academic and occupational functioning can be adversely affected if a person is struggling with anxiety or depression. Similarly, neuropsychological deficits can adversely affect social development, impairing one’s ability to establish and sustain satisfying relationships in adulthood. In addition, one cannot fully appreciate adult outcomes without considering their origins in childhood and adolescence. In this review, we thus apply a developmental lifespan perspective to better understand neurocognitive and psychosocial outcomes of …