A lifetime perspective on mental health in congenital heart disease: insights from the life history calendar

Abstract Background Life expectancy of patients with congenital heart disease (CHD) is steadily increasing, leading to a growing and aging population. However, psychosocial challenges remain prevalent. Cross-sectional studies indicate that approximately one-third of adults with CHD report mood or anxiety disorders, which are linked to poorer quality of life, higher healthcare use and increased mortality. Nonetheless, evidence on the course of mental health across the lifespan remains limited. Purpose This study aims to examine the lifetime course of self-reported feelings of depression, anxiety and loneliness in patients with CHD. Methods In this cross-sectional, multicentre study, 542 patients with CHD were included. Mental health data were available for 536 patients (median age 39.0y (27.0-51.8); 45% women; disease complexity: 19% mild, 54% moderate, 27% complex). A life history calendar was used to retrospectively collect patient-reported mental health from birth until inclusion. The calendar assessed the presence of self-reported feelings of depression, anxiety, and loneliness, without requiring a formal clinical diagnosis. Results Self-reported mental health issues over the life course were present in 54.3% of patients. Depressive feelings occurred in 41.4%, with 78.8% experiencing one period and 17.1% two. The cumulative duration of depressive periods ranged from 1 to 39 years (median 2.0y (1.0-6.3)), accounting for a median of 7.1% (3.2-18.3) of attained age. The first period began at a median age of 24.5 years (18.0-37.0). Feelings of anxiety were reported by 30.8% of patients. Most (87.3%) experienced a single period, while 10.3% and 2.4% reported two and three periods, respectively. The median total duration was 3 years (1.0-9.0y), corresponding to 9.8% (3.7-29.3) of observed years. The median age at onset of the first period was 23.0 years (16.0-36.0). Feeling lonely was reported by 25.6% of patients. Almost all (94.2%) had one period, while 5.1% and 0.7% reported two and three periods, respectively. Total duration ranged from 1 to 53 years (median 4.0y (2.0-9.5)), representing a median of 10.4% (4.4-25.9) of years lived. The median age at onset was 23.0 years (16.0-34.0). For all mental health issues, subsequent periods were shorter than the first. Kaplan–Meier curves showed a sharp decline in depression-, anxiety-, and loneliness-free survival in early adulthood, followed by a plateau, indicating that most first periods occurred at younger ages. Loneliness-free survival remained higher than depression- or anxiety-free survival (Figure). Conclusion Self-reported mental health issues are common in patients with CHD, with feelings of depression reported most frequently. Most patients experience a single period, with onset typically occurring in the late twenties. These findings demonstrate a substantial mental health burden across the lifespan and emphasize the importance of early identification and timely psychological support.