Symptoms of post-traumatic distress and quality of life in adults with aortopathy and congenital heart defects or hereditary connective tissue diseases.

Background: Aortopathies do not only occur in acquired heart disease but are often associated with congenital heart defects (CHD) or hereditary connective tissue disease (HCTD). Individuals diagnosed with these conditions have an increased risk of life-threatening events, such as aortic dissection or rupture. The diagnosis of an aortopathy or the occurrence of complications are life-changing and psychologically stressful events, possibly inducing post-traumatic stress symptoms (PTSS) and a reduced quality of life (QoL). This study aimed to estimate the prevalence of PTSS and QoL related to cardiological parameters in adults with aortopathies and CHD or HCTD.

Methods: This retrospective epidemiological cross-sectional study enrolled 137 adults with aortopathies and CHD or HCTD between May 2024 and October 2024. PTSS and QoL were assessed using the Posttraumatic Diagnostic Scale, the Impact of Event Scale-Revised, the Short Form-36, and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). The reasons for PTSS were explored using free-text responses. Descriptive analyses were performed to assess measures of central tendency and distribution. To examine differences and associations, non-parametric tests and Spearman's rank correlation were applied, and logistic regression models were used to further investigate medical and psychological associations.

Results: Overall, 5.8% (n=8) to 7.3% (n=10) of the enrolled patients [mean age: 41.1±10.8 (18 to 63) years; 54% women] showed elevated PTSS indicative of clinical concern related to their aortopathy. Between pre-existing psychological disorders and PTSS, a significant association could be observed (odds ratio: 9.71, P=0.007). Cardiac parameters were not significantly associated with developing PTSS. Free-text responses showed a wide range of distressing events, ranging from anxiety, pain or shock to physical limitations. Overall QoL was good, although patients with PTSS showed a lower QoL (MLHFQ: 12.30 vs. 21.90, P=0.004).

Conclusions: Despite the low prevalence of PTSS and generally good QoL, our findings underscore the importance of incorporating psychological screening into standard care for patients with CHD or HCTD with aortopathies. A holistic approach that goes beyond the medical management of aortopathies and includes comprehensive psychological support is essential in optimizing patient outcomes.