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

Introduction

The aorta can be affected either acutely or chronically in the natural course of acquired or congenital diseases (1). Such aortopathies are characterized by morphologic changes in the aortic wall, leading to a progressive dilation or aneurysma formation, which can occur in any location of the aorta, particularly the ascending, the descending or abdominal aorta. Histologically, aortopathies are characterized by aortic media degeneration (2). Aortic dissections are a severe manifestation of aortic diseases, characterized by a tear in the aortic intima and associated with high mortality and morbidity (3). Certain congenital heart defects (CHD) as well as non-syndromic and syndromic connective tissue disease (HCTD) predispose individuals to aortopathies (2,3).

CHD and HCTD are known to pose a psychological burden for the patients and may result in a reduced quality of life (QoL) (4-8). Particularly individuals with an additional aortic disease are at risk of developing psychological stress, anxiety, depression or post-traumatic stress disorder (PTSD) (9-12).

Research on acquired aortopathies suggests that patients who have experienced an aortic dissection, have a higher risk of developing PTSD compared to the general population (11-13). Yet, even the diagnosis of an aortic aneurysm can increase the risk of depression (14). In the absence of a medical diagnosis of PTSD, this study covers post-traumatic stress symptoms (PTSS). PTSS are referred to as symptoms that can be experienced after a traumatic event. These symptoms include flashbacks, physical reactions, avoidance of trauma-related reminders, emotional numbness, or hypervigilance (15). In addition to the higher risk of developing a psychological disorder, patients with acquired aortopathies often experience a reduced QoL (16,17). In the long-term, patients with CHD or HCTD may develop a deterioration in QoL due to the ongoing need for medical care, physical limitations, and the continuous concern about potential complications (4,5). Given the genetic component of aortopathies, particularly in patients with HCTD, not only individuals but several family members may be affected or at risk of experiencing an aortopathy. This can lead to a considerable psychological impact within families, as individuals and relatives have to cope with ongoing health uncertainties and the impact of genetic risk (18). Despite the well-known connection between acquired aortopathies, psychological disorders, and QoL, there is a significant lack of research on the relationship between aortopathies associated with CHD or HCTD and resulting PTSS and QoL. This study aimed to (I) assess the psychological status, specifically PTSS; (II) examine the association between PTSS and various medical cardiological parameters; and (III) evaluate QoL in patients with aortopathies and CHD or HCTD. We present this article in accordance with the STROBE reporting checklist (available at https://cdt.amegroups.com/article/view/10.21037/cdt-2025-224/rc).

Methods

This retrospective epidemiological cross-sectional study was conducted at the TUM University Hospital, German Heart Centre Munich, a tertiary care centre for all types of CHD and in cooperation with the Department of Cardiac Surgery of the University Hospital Erlangen, Germany. The inclusion criteria were (I) manifest aortopathy with CHD or HCTD; (II) participant age ≥18 years; (III) sufficient physical, cognitive, and language capabilities to complete self-report questionnaires; and (IV) German speaking. Patients were excluded if they had severely impaired cognitive abilities or any manifest psychotic illness. The following CHD and HCTD associated with aortopathies were included in the study: bicuspid aortic valve, aortic coarctation, tetralogy of Fallot, pulmonary atresia, truncus arteriosus, any aortic valve replacement, ectasia of the aortic bulb or ascending aorta of more than >38 mm in normal sized adults, Marfan syndrome (MFS), Loeys-Dietz syndrome (LDS), vascular Ehlers-Danlos syndrome (vEDS) and Fabry disease. Due to the exploratory character of the study, the number of patients to be enrolled remained undefined.

Data collection took place between May 2024 and October 2024. Patients fulfilling the inclusion criteria were given a study package during their routine examinations at the outpatient unit of the Department of Congenital Heart Disease and Pediatric Cardiology at the TUM University Hospital, German Heart Center Munich. The study package consisted of (I) study information, (II) written informed consent, and (III) questionnaires. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the regional Ethics Committee of the Technical University of Munich (570/21 S-KK) and informed consent was obtained from all individual participants.

A self-administered questionnaire obtained sociodemographic information and the patients’ general state of health. For the assessment of PTSS, the Posttraumatic Diagnostic Scale (PDS) and the Impact of Event Scale-Revised (IES-R) were used (19,20). For this purpose, patients were asked to refer to their worst experience related to their aortopathy. Those without such experiences were advised not to complete the questionnaires and were not considered as exhibiting PTSS, as our focus is solely on PTSS prevalence in relation to an aortopathy. This was relevant, since experiencing a traumatic event is a central criterion for the diagnosis of PTSD and PTSS (21).

The PDS is based on DSM-5 criteria and used to evaluate the severity of PTSD symptoms in the previous month (19). A score cut-off of 11 indicates a probable diagnosis of PTSD symptoms, whereas a higher total score reflects a higher severity of PTSD symptoms (22). The IES-R is a 22-item questionnaire assessing distress related to traumatic events on three subscales (20). A score of 24 or higher indicates mild PTSD symptoms, while a score of 33 or higher suggests moderate PTSD symptoms (23). As patient-reported questionnaires do not provide a valid clinical diagnosis of PTSD, the results of the PDS and IES-R are referred to as PTSS.

The Short Form-36 (SF-36) and Minnesota Living with Heart Failure Questionnaire (MLHFQ) were used to assess QoL. The SF-36 assesses health-related QoL over the past 4 weeks. It consists of eight scales, which can be grouped into the Physical Component Summary and the Mental Component Summary (24). The scales are scored from 0, indicating the poorest QoL, to 100, indicating best QoL (25). The MLHFQ is commonly used to assess health-related QoL in patients with heart failure. It consists of 21 items, where a total score can range from 0, indicating the best health-related QoL, to 105, indicating the worst. In addition to the overall score, the MLHFQ provides scores for a physical dimension and an emotional dimension (26).

Psychometric details for all questionnaires can be found in the supplementary material. Clinically relevant cardiac parameters were obtained retrospectively from the available medical records. According to the classification of Perloff et al., all patients were classified based on their functional limitations into functional classes (FC) I (asymptomatic) to IV (symptoms that interfere with most if not all activities) (27).

CHD patients were further categorized as having mild, moderate, or severe CHD based on their complexity, following the classification of the European Society of Cardiology (28).

Statistical analysis

All calculations were conducted using IBM SPSS Statistics Version 28.0 (IBM Inc., Armonk, New York, USA). Descriptive analyses were conducted to calculate measures of central tendency and distribution. All questionnaires were analyzed according to their analysis instructions. Non-parametric tests were used to examine differences and associations. In addition, Spearman’s rank correlation was used to identify potential associations. Logistic regression models were used to further explore the medical and psychological associations by calculating odds ratios (ORs) and 95% confidence intervals (CIs). All P values and significance tests were performed two-sided, with statistical significance set at P<0.05. The responses to the open-ended questions relating to an aortopathy-related event were clustered into themes and independently assigned by two researchers. In case of ambiguity or disagreement, the respective response was discussed and reviewed by both researchers to reach a consensus.

Results

The questionnaires were administered at the TUM University Hospital, German Heart Centre Munich outpatient clinic to a total of 168 patients. The questionnaires were returned by 143 patients, which results in a response rate of 85.1%. Six questionnaires had to be excluded due to missing consent or missing data. In the final statistical analysis, a total of 137 patients [mean age: 41.1±10.8 (18 to 63) years] were included. The sociodemographic characteristics are presented in Table 1.

In total, 85.4% (n=117) patients are diagnosed with CHD, whereas 14.6% (n=20) have HCTD. Moreover, 92.7% (n=127) patients could be categorized into FC I/II and 63.7% (n=81) of CHD patients were classified as having a moderate or severe CHD. The clinical characteristics are listed in Tables 2,3.

Regarding aortopathies, 35% (n=48) of the patients had an aortic ectasia/aneurysm and 3.6% (n=5) reported an aortic complication.

In terms of psychological disorders, 30.7% of the patients (n=42) stated that they had experienced psychological problems, including depression (24.8%, n=34), anxiety (14.6%, n=20), eating disorders (1.5%, n=2), addiction (0.7%, n=1), psychotic experiences (0.7%, n=1) and compulsions (0.7%, n=1).

Patients are asked to complete the PDS and the IES-R only in case of experiencing an adverse event related to their aortopathy. Both questionnaires were completed by 34 patients, all other patients are handled as not showing PTSS. Among the 34 patients who completed the PDS questionnaire 5.8% (n=8) were identified as having PTSS, with four individuals each being classified as having mild or moderate PTSS. Patients were classified as having mild PTSS if they scored ≥11 and ≤20, and as having moderate PTSS if they scored ≥21 and ≤35. Based on the IES-R questionnaire, 7.3% (n=10) of patients were identified as having PTSS. Overall, one person had a total score higher than 24 indicating mild PTSS, whereas the remaining nine people could be classified as having moderate PTSS (score ≥33). Of the 10 patients who achieved the IES-R cut-off value, 6 patients also met the PDS cut-off score (k=0.549, P=0.001). There was no association between age (P=0.98), gender (P=0.54) and the development of PTSS based on the IES-R scores.

For further analysis regarding associations between cardiac parameters, psychological parameters and PTSS, only the IES-R total score was used for the assessment (Table 4). No significant differences could be observed between PTSS and CHD severity (P=0.25). There were no significant differences between PTSS and FC (P=0.38), as well as between PTSS and CHD diagnostic groups and HCTD diagnosis (P=0.34). Furthermore, there were no significant differences between PTSS and the treatments carried out, such as medication (P=0.25), interventional treatments (P=0.21), operations (P=0.64) or reoperations (P=0.14). This was also true for having a homograft (P=0.76) or conduit/vascular prosthesis (P>0.99) implanted. Having arrhythmias (P=0.76) or other cardiac (P>0.99) and non-cardiac comorbidities, such as hyperuricemia (P>0.99) and diabetes mellitus (P>0.99), were not associated with developing PTSS. In contrast, PTSS was significantly associated with the presence of a psychological disorder (OR 9.71, P=0.007).

Overall, 91.2% (n=125) patients answered the MLHFQ. The average total score of the MLHFQ was 13.82±17.75, with the physical dimension averaging 6.52±8.22 and the emotional dimension averaging 4.06±5.64. For further analysis, the total score of the MLHFQ was used. Analysis revealed a significant difference in overall QoL between individuals with and without PTSS (P=0.004). Patients without PTSS also had significantly better scores on the physical (P=0.003) and emotional (P=0.01) dimension (Table 5). Yet, there was no significant difference between QoL and CHD severity (P=0.40), FC (P=0.77) and CHD or HCTD diagnosis (P=0.34).

In total, 97.8% (n=134) patients answered the SF-36 questionnaire. The average of the Mental Component Summary was 49.81±11.15, whereas the average of the Physical Component Summary is 51±9.26. Patients without PTSS had significantly higher scores on the Mental Component Summary (P<0.001), while no significant difference was observed between the Physical Component Summary and having PTSS or not (P=0.06) (Table 5).

Patients should describe the occurrence and their personal experience of an aortic aneurysm/ectasia or aortic complication in text form. The responses were categorised into eight categories (Table 6). Anxiety (13.2%, n=7), pain (9.4%, n=5), physical limitations (9.4%, n=5), distress (11.32%, n=6), and shock (5.66%, n=3) were the most frequently reported experiences. Many patients also mentioned no limitations or distress (13.2%, n=7), the aortopathy was normal for them because it is congenital (5.66%, n=3) or they could not remember such experiences because they were too young at the time of diagnosis or surgery (9.4%, n=5).

Discussion

To our knowledge, this study is the first to investigate the prevalence of PTSS and QoL in patients with aortopathies associated with CHD or HCTD. Several key findings were obtained in this study. First, a substantial proportion of the patients (5.8% to 7.3%) showed elevated PTSS indicative of clinical concern according to the questionnaires cut-off values. Second, a positive history of psychological disorder was significantly associated with PTSS. Third, while some patients reported anxiety, pain, or physical limitations as sources of distress, others experienced no distress or limitations related to their most stressful event. Lastly, although overall QoL was good, patients with PTSS showed significantly impaired QoL.

The prevalence of PTSS reported in this study, 5.8% and 7.3%, is higher than the 1% to 3% prevalence of PTSD observed in the general population of Germany (29). Nevertheless, these rates are considerably lower than rates reported in prior studies involving aortic dissection survivors (23%), adults with congenital heart defects (ACHD) (11% to 21%) or HCTD patients (20.5%) (6,12,30,31). The diagnosis and life-threatening nature of aortopathies, including the need for invasive or surgical treatments—often emergency open-heart surgery—and the awareness that one’s life is at risk may be contributing factors in developing PTSS in these patients (32). As additional disease impairments are cited as peri-traumatic risk factors for developing PTSD, it can be assumed that the presence of an aortopathy, alongside underlying conditions such as CHD or HCTD, may increase the likelihood of developing PTSS (33). Moreover, the presence of PTSS underscores the need for early psychological screening, which is either insufficiently or entirely absent from routine examinations and therefore warrants greater clinical attention. This is particularly important since a considerable number of patients expressed a desire for psychosomatic or psychotherapeutic treatment in this study. Addressing PTSS, and other psychological disorders early could prevent long-term psychological consequences and improve overall patient outcomes (2). The relatively low prevalence of PTSS in this study, may suggest that some patients possess high levels of resilience, effective coping strategies or robust social support to help them manage their condition. A high level of resilience is particularly important when having a chronic disease like CHD, HCTD or an aortopathy, as these diseases demand coping with considerable physical and emotional challenges (4-7). Individuals who were diagnosed before birth or in early childhood and who essentially grew up with their condition may have had more opportunities to develop resilience and coping strategies. Consequently, they may perceive their disease and the associated challenges less negatively than those who were diagnosed later in life and who may not have had the same chance to develop such strategies (34). Additionally, research highlights that a strong social support and a robust sense of coherence serve as protective factors against the development of PTSS, whereas low resilience is considered a risk factor that increases the likelihood of PTSS in ACHD (35).

Our study revealed a ten times higher chance of developing PTSS in patients with a positive history of a psychological disorder. This association is well documented in previous literature, in which psychological disorders are cited as pre-traumatic risk factors of PTSD (36). It can be assumed that patients with an additional, potentially life-threatening aortopathy may experience a “double psychological burden”. Our results are in line with this assumption; however, it remains unclear whether PTSS is primarily caused by CHD or HCTD alone or whether it was caused by the additional aortopathy.

Our findings do not align with previous studies reporting an association between cardiac surgery and PTSD in ACHD (30,37). Conversely, our results are supported by Deng et al., who found that cardiac interventions, such as catheterization, do not influence PTSD development (6). No association was observed between CHD/HCTD diagnosis, CHD severity, and PTSS, consistent with prior research (6,30,38). Similarly, no association was found between FC and PTSS, contrasting with Harrison et al. (38). However, in this study, nearly all patients are classified into FC I and II, indicating no limitations or symptoms that interfere with normal activities (27). Moreover, the absence of a relationship between cardiac and non-cardiac comorbidities and PTSS is consistent with existing literature, suggesting that functional limitations and medical interventions may have a greater impact on PTSS development than comorbidities themselves (6,30,38).

Patients were asked to report their most stressful event in terms of their aortopathy. They reported anxiety, pain, stress, and shock primarily related to diagnosis and surgery, indicating these as key distress factors. Some had little recollection, possibly due to repression or young age. The perception of the disease as “normal” suggests high familiarity potentially mitigating the psychological impact.

We observed an overall good QoL and the results of the questionnaire subscales matched those of a normative sample and were also better than those of patients with heart failure (39,40). However, our finding do not support the idea that QoL is worse in individuals with at least chronic disease, as we report good QoL in patients with more than one chronic condition (39). This indicates that an aortopathy in CHD and HCTD patients may not affect QoL as negatively as expected, despite potential limitations from invasive procedures, restricted mobility, and frequent medical check-ups. Andonian et al. referred to this as the “well-being paradox”, where ACHD with complex CHD still report a high QoL (34). Nevertheless, it is essential to acknowledge that QoL is a multifaceted construct, shaped not only by physical health, psychological well-being, independence, and social relationships, but also by the individual’s subjective perception (41).

In contrast to the overall good QoL, we observed a significantly worse QoL in patients with PTSS. This finding aligns with existing literature in ACHD or patients recovering from acute aortic dissection (30,34,42). PTSD can have a significant impact on QoL, as untreated symptoms often lead to impairments in social interactions, interpersonal relationships, physical health and occupational performance (21).

Notably, patients with PTSS exhibited significantly poorer outcomes in the psychological subscales of QoL compared to those without PTSS. This seems plausible as PTSD is comorbid with psychological disorders such as anxiety and depression (21,43). Regarding overall QoL and cardiac parameters, no significant associations were found between QoL and the severity of CHD or FC. This is in contrast to findings that impairment in QoL is primarily related to the functional limitations of CHD rather than its complexity (6,30,34). The majority of the patients in this study were categorized into FC I and II, indicating no limitations or symptoms that interfere with normal activities (27). Therefore, it is reasonable to assume that the absence of a noticeable association between QoL and FC can be attributed to the relatively unrestricted functional status of the patients. Our findings underline the importance of going beyond medical outcomes and considering the broader psychosocial aspects of living with such chronic and life-threatening conditions. Velvin et al. propose that, alongside the patient’s perspective, the involvement of relatives in clinical decision-making is essential, as they play a crucial role in shaping the patient’s perceived QoL by serving as their support system (44).

This study has several limitations that should be taken into account when interpreting the results. First, due to the use of cross-sectional data, it is not possible to identify causal relationships. Longitudinal studies are needed to determine causality and to obtain a better understanding of the time course of PTSS and QoL in this population. Secondly, only patients who volunteered to take part in the study were included, which may lead to selection bias. Here, it should be noted that the majority of those approached agreed to participate, which may mitigate these concerns to some extent. Thirdly, patients’ responses may have been influenced by social desirability, which could lead to under-reporting of psychological symptoms. Fourth, the study was conducted in a tertiary care centre for ACHD. As the study was limited to a single centre, the results may not represent all ACHD patients, patients with HCTD or individuals with aortopathies. Fifth, some patients may not have been able to recall traumatic events, such as childhood surgery, or may have repressed such memories, leading to possible recall bias. Sixth, the study was not able to make a clinical diagnosis of PTSD but was limited to the identification of PTSS. This limitation results from the use of self-report questionnaires, which are useful for screening but do not meet the diagnostic standards for PTSD. Moreover, due to the study design, not all patients completed the PTSS questionnaire, which may introduce selection bias and further limits the validity and generalizability of the observed prevalence estimates. The generalizability of the results may be further impaired by incomplete responses, as not all patients completed both QoL questionnaires. Lastly, the small sample size of HCTD patients may have reduced the power of subgroup analyses, increasing the risk of Type II errors and affecting the accuracy and reliability of the findings.

Conclusions

In summary, this study demonstrates a relatively low observed prevalence of PTSS and an overall good QoL within the investigated study sample. Nevertheless, the presence of PTSS and the association between pre-existing psychological disorders, PTSS, and QoL highlights the importance of integrating psychological screening into standard care. Our findings emphasize the need for a comprehensive approach to patient care that goes beyond the medical management of aortopathies and actively addresses the psychological well-being and QoL of patients with aortopathies, CHD, or HCTD. Further research with larger sample sizes, particularly for HCTD patients, is needed to better understand the relationships between cardiological parameters and PTSS, and should also incorporate the perspectives of relatives. Additionally, longitudinal studies should be conducted to establish causality and gain deeper insights into the progression of PTSS and QoL in this patient population.

Acknowledgments

None.

Footnote

Provenance and Peer Review: This article was commissioned by the Guest Editor (Harald Kaemmerer) for the series “Current Management Aspects in Adult Congenital Heart Disease (ACHD): Part VI” published in Cardiovascular Diagnosis and Therapy. The article has undergone external peer review.

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://cdt.amegroups.com/article/view/10.21037/cdt-2025-224/rc

Data Sharing Statement: Available at https://cdt.amegroups.com/article/view/10.21037/cdt-2025-224/dss

Peer Review File: Available at https://cdt.amegroups.com/article/view/10.21037/cdt-2025-224/prf

Funding: This work was supported by the German Heart Foundation/German Foundation of Heart Research (F/24/23).

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://cdt.amegroups.com/article/view/10.21037/cdt-2025-224/coif). The series “Current Management Aspects in Adult Congenital Heart Disease (ACHD): Part VI” was commissioned by the editorial office without any funding or sponsorship. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the regional Ethics Committee of the Technical University of Munich (570/21 S-KK) and informed consent was obtained from all individual participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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