When children with congenital heart disease become adults – Understanding psychosocial attainments and functioning in comparison to census population norms

Abstract Background Adults outnumber children living with congenital heart disease (CHD), but research on outcomes for this population in terms of sociodemographic attainments such as education, employment and relationship status is only starting to emerge. Objectives We examined such outcomes in a UK clinic sample. Determinants of outcome were examined in relation to disease severity and psychological functioning. Methods Using a survey with clustered clinic sampling, we evaluated outcomes for a final sample of 116 adults with significant congenital heart disease (ACHD) on common measures of sociodemographic attainment. Outcomes were compared to national population data. Results Findings suggested that ACHD compared relatively well with respect to educational attainment and employment. However, they were less likely to be living independently and have offspring than peers and more likely to be single and earning below the average wage. Most outcomes did not vary significantly by disease severity (with the exception of having offspring). Rather, psychological factors – mood, resilience, executive functioning and self-perceptions of health predicted attainment outcomes in various domains. Conclusions Although some outcomes are comparable to peer referenced norms, ACHD deviated from population norms with respect to interpersonal functioning, having offspring and employment earnings. Findings suggested that psychological and neuropsychological factors were more important than disease severity in predicting outcomes. Clinical implications are discussed.