Living with congenital heart disease

Abstract

Congenital heart defects, affecting 9.4 out of 1000 newborns, represent the most prevalent congenital diseases. Advances in medical and surgical interventions have significantly increased the survival rate, with over 90% of affected individuals now reaching adulthood. This study focuses on a cohort of patients who underwent surgical corrections in Rotterdam between 1968 and 1980, offering insights into their quality of life 40-53 years post-surgery, with a specific emphasis on psychosocial aspects. This research, focusing on the psychopathological aspects of adults with congenital heart disease, reveals a temporal decrease in psychopathology, though an increase in the last decade is noted. Gender differences were underlined in psychological well-being, with women experiencing more internalizing problems, while men exhibit fewer externalizing problems compared to their peers. Interestingly, adults with congenital heart disease do not demonstrate lower executive functions, but are more likely to have lower educational and occupational levels than the general population, especially in higher professions.Additionally, adults with congenital heart defects show reduced involvement in sports, irrespective of the severity of their condition. However, engagement in physical activity correlates with better psychological well-being. Moreover, they perceive their life expectancy similarly to, or even more positively than, their healthy peers. Furthermore, they show reluctance to engage in end-of-life discussions with physicians. Finally, this thesis highlights the favourable cardiological long-term prognosis for individuals with atrial septal defect, a relatively uncomplicated congenital heart defect.In summary, this thesis contributes robust data and valuable insights into the long-term development and evolving quality of life of adults with congenital heart diseases, from surgical intervention to adulthood.<br/

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