Psychosocial situation in adults with congenital heart defects today and 20 years ago: Any changes?

Background: While diagnosis and treatment of congenital heart diseases have improved over the last two decades, data regarding the course of psychosocial parameters is missing. Methods: In a cross-sectional study, 283 adults with congenital heart disease completed a slightly modified questionnaire that was applied in a comparable study twenty years ago. Significant differences between the two populations as well as possible predictors of psychosocial burden for the recent population were sought. Results: Despite the presence of more complex heart defects in the current cohort (p < 0.001), both populations exhibited similar values in the Ability Index. Furthermore, the current cohort reported significantly improved outcomes regarding school performance, employment, and sports. Regarding psychosocial functioning, the current cohort showed better outcomes in the domains of sadness (p < 0.01), independence (p < 0.01), understanding (p < 0.001), and acceptance (p < 0.01) of heart disease. Predictors for a worse psychosocial situation in a multiple regression analysis were anxiety, lack of curiosity, and age over 33. In the current study women, as opposed to men, reported significantly more dissatisfaction with too little information provided about their illness (p < 0.05), higher anxiety levels (p < 0.01), and heightened illness-connected burden (p < 0.05). However, women showed higher levels of independence (p < 0.01) and lower alcohol consumption (p < 0.001). Conclusion: The psychosocial situation of adults with congenital heart disease has improved over the span of 20 years. However, particular needs and concerns should be addressed individually via doctor-patient communication. The findings here suggest that especially female patients appear to have a higher demand for counselling information, e.g. reproduction issues.