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Article

Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons

by
Anna-Lena Ehmann
1,2,3,
Emily Schütte
1,2,
Janina Semmler
4,
Felix Berger
1,2,5,
Ulrike M. M. Bauer
3,5,
Katharina Schmitt
1,2,5,6,
Constanze Pfitzer
1,2,5,† and
Paul C. Helm
3,*,†
1
Department of Congenital Heart Disease—Pediatric Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, Germany
2
Charité—Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, 10117 Berlin, Germany
3
National Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany
4
Department of Obstetrics, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Augustenburger Platz 1, 13353 Berlin, Germany
5
Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany
6
Department of Psycho-Cardiology, Deutsches Herzzentrum der Charité, Augustenburger Platz 1, 13353 Berlin, Germany
*
Author to whom correspondence should be addressed.
†
These authors have contributed equally to this work and share senior authorship.
J. Cardiovasc. Dev. Dis. 2025, 12(6), 231; https://doi.org/10.3390/jcdd12060231
Submission received: 31 March 2025 / Revised: 13 June 2025 / Accepted: 16 June 2025 / Published: 18 June 2025
(This article belongs to the Section Pediatric Cardiology and Congenital Heart Disease)
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Versions Notes

Abstract

:
Improved medical treatments have extended survival and life expectancy in adults with congenital heart defects (ACHD), placing greater emphasis on psychosocial health. Up to one-third of ACHD experience anxiety or depression, and half develop a mental illness during their lifetime. While there is solid evidence on the prevalence of mental health, many do not receive psychological, psychotherapeutic, or psychiatric treatment (PST) and the psychological care situation remains understudied. In a nationwide, online cross-sectional survey conducted in Q1 2024, 1486 ACHD aged 18 to 85 (Mage = 36.84 years; 60.8% female) registered in the German National Register for Congenital Heart Defects (NRCHD) completed self-report questionnaires on sociodemographics, illness identity (Illness Identity Questionnaire), mental well-being, and utilisation of PST. CHD diagnoses were determined in conformity with the International Pediatric and Congenital Cardiac Code (IPCCC) and CHD was classified according to Warnes et al. (simple/moderate/complex). Analyses included chi-square tests, t-tests, and binary logistic regression. Overall, 32.8% of participants reported current and/or previous PST (women 37.5%, men 25.3%). PST utilisation was significantly higher in those with complex (40.2%) compared to moderate (29.6%) and simple CHD (25.3%) (ps < 0.01). Primary treatment reasons were mental illness (41.7%) and CHD-related concerns (37.2%). Nearly half of treatments were self-initiated (45.8%) and about one-third were physician-recommended (30.8%). Logistic regression revealed CHD severity as a significant predictor of PST use (ps < 0.05), with lower odds for simple (OR = 0.48) and moderate (OR = 0.66) compared to complex CHD when controlling for sex (p < 0.001, OR = 1.87), age (p = 0.022, OR = 1.011), education level (ps between 0.060 and 0.780), and net income (ps < 0.05). Those receiving PST showed significantly higher maladaptive illness-identity scores (engulfment, rejection) and lower acceptance. Approximately one in three ACHD requires mental health support, particularly those with complex CHD. The CHD itself acts as a key stressor and treatment motivator. Findings underscore the need for integrated care linking cardiological and psychosocial services. Routine screening for psychological distress and low-threshold access to PST—also for patients with simple and moderate CHD—are essential to identify and address mental health needs early.

Graphical Abstract

1. Introduction

Congenital heart defects (CHD) occur in about 0.8–1.2% of all live births [1]. Due to significant advancements in CHD treatment, survival rates and life expectancy have greatly improved [2,3,4]. As a result, psychosocial factors, including quality of life (QoL) and mental health, have become increasingly important [5,6].
CHD is associated with numerous everyday limitations and stressors, such as reduced physical performance, concerns about disease progression, social comparisons, or issues relating to career choice and family planning [7,8,9]. Numerous studies provide evidence that these illness-related stressors are associated with an increased risk of mental stress and illness in adults with CHD (ACHD). In particular, anxiety disorders and depression are common in this patient group. According to studies, around one-fourth to one-third of ACHD suffer from an anxiety disorder and/or depression [6,10,11,12,13,14], resulting in a lifetime prevalence of about 50% [12,15]. This increased risk of mental illness in CHD relates not only to anxiety disorders and depression, but is also evident in relation to bipolar disorders, psychosis, attention deficit hyperactivity disorder, post-traumatic stress disorder, personality disorder, and autism [6,12,16,17,18]. Results from German samples mainly suggest that a higher expression of depression and anxiety symptoms appears to exist regardless of CHD severity [19,20]. However, the relationship between CHD severity and mental health seems complex and multifaceted, and our study focuses on the utilisation of mental health treatment rather than the prevalence of mental health issues.
As a relevant factor in the context of mental distress in ACHD, illness identity, which evaluates the extent to which a chronic illness becomes part of one’s identity and influences self-perception, was identified in previous studies [21,22], potentially providing a starting point for explaining emotional stress in this patient group. While adaptive dimensions of illness identity such as acceptance and enrichment tended to be negatively correlated with symptoms of depression and anxiety, maladaptive dimensions such as engulfment and rejection tended to be associated with increased psychopathological symptoms. The emotional confrontation with the illness itself therefore plays a central role in the experience of emotional stress and mental illness and is discussed as a moderating factor [21].
Mental health itself was identified as a predictor of quality of life in ACHD [6,10] and is also linked to perceived state of health and exercise capacity [14,23], which makes it particularly important to consider psychological well-being for a comprehensive care of the patient group.
Although it is known that chronic illnesses in general are associated with a higher risk of mental illness [24], mental stress in ACHD has so far been insufficiently recognised and treated [10,12,25]. In their review, Kovacs et al. [8] emphasise that mental health treatment is still uncommon despite improved medical care. Overall, research on the treatment of mental health issues in ACHD is still limited and robust data on this clinically highly relevant topic are missing [26].
Therefore, this study addresses the aforementioned research gap and records the utilisation of psychological, psychotherapeutic, and psychiatric treatment (PST) in ACHD in Germany. The aim of this study is to identify the reasons for treatment as well as possible sex and CHD severity differences in addition to the utilisation of the corresponding treatment. To the best of our knowledge, this is the first nationwide study to investigate the use of mental health treatment services in this patient group.

2. Materials and Methods

2.1. Study Design

This online-based cross-sectional study examined PST use and illness identity in ACHD. Data collection was conducted during the first quarter of 2024. A total of 1486 ACHD patients from the National Register for Congenital Heart Defects (NRCHD) participated by completing self-report questionnaires on sociodemographic data, illness perception and identity, emotion regulation, mental well-being, and the utilisation of cardiological and psychological treatment. Participants were invited via email, and their medical records from the NRCHD database were included in the statistical analysis. Cardiac conditions were classified using the internationally recognised Warnes et al. [27] severity classification and the International Pediatric and Congenital Cardiac Code (IPCCC) [28]. The Warnes et al. classification system categorises CHD into simple, moderate, and complex based on anatomical complexity, clinical course, and care needs. Simple defects have favourable outcomes and minimal follow-up, moderate ones require interventions and regular monitoring, while complex cases involve complicated anomalies needing lifelong specialised care. This widely used system guides clinical management, research, and resource planning [27].

2.2. National Register for Congenital Heart Defects

The NRCHD is located in Berlin, Germany, and holds medical records for around 60,000 individuals with CHD (as of March 2025), making it one of the most extensive CHD databases in Europe. Serving as a key resource for clinical research in this field, the NRCHD facilitates studies on various aspects of CHD [23]. Participation is voluntary and requires patients to provide general consent, allowing the NRCHD to gather and store medical data from their treating physicians. This consent applies to both ongoing and future research, while participants retain the right to revoke it at any time.

2.3. Measures

2.3.1. Mental Health Treatment

Patients were asked about their current or past involvement in PST, as well as whether they were previously or at the time of the survey undergoing such treatments. They were also asked if they were on a waiting list for psychotherapy. Additionally, multiple reasons for seeking treatment could be selected, and the person who initiated the treatment, as well as the healthcare professional providing it, were recorded. As studies indicate a gap between prevalence and treatment [12,15,25], the selected questions aimed to identify potential barriers and care pathways but also to explain the decision and motivation to start treatment.

2.3.2. Illness Identity

The Illness Identity Questionnaire (IIQ) [22] assesses the extent to which individuals incorporate their illness into their personal identity. This standardised and validated questionnaire has already been used several times in ACHD samples, has been associated with healthcare use and has demonstrated good reliability in this population [21,26,29,30,31]. It comprises four distinct dimensions: engulfment and rejection, which reflect a lack of integration, and acceptance and enrichment, which represent more adaptive ways of integrating the illness into one’s identity. Each dimension is evaluated using multiple items, rated on a five-point scale ranging from 1 (lowest level) to 5 (highest level). Mean scores are calculated for each dimension. Cronbach’s alpha was calculated to determine the internal consistency. This was 0.92 for the engulfment scale (8 items), 0.81 for rejection (5 items) and acceptance (5 items), 0.94 for the enrichment scale (7 items), and 0.83 for the whole IIQ (25 items).

2.4. Statistical Analyses

Data were analysed using SPSS (Version 29.0). We performed chi-square tests to compare group differences by sex and CHD severity. Binary logistic regression was conducted with treatment use (past and/or current vs. never) as a dependent variable and CHD severity (simple/moderate/complex), age, sex, education level, and net income (categorised into low: <1750 €, medium: 1750 €–3999 € and high: >3999 €) as independent variables to identify predictors of PST use. As 127 people did not provide any information on their net income, and 223 patients were excluded from the analyses due to lack of medical information concerning CHD severity (‘no class’), the logistic regression was carried out with a reduced sample size of N = 1136. The final sample remained sufficiently large to ensure statistical power. A t-test for independent samples was conducted to evaluate significant differences in illness identity dimensions between ACHD who received vs. not received PST at the time of the survey. The significance level was set at 0.05.

2.5. Ethical Statement

The Charité granted an ethical approval for this study (EA4/178/22). Participants provided written informed consent to take part in this study.

3. Results

3.1. Study Cohort

Overall, 1486 ACHD (Mage = 36.8 years, SDage = 14.6; 60.8% female) took part in the survey and were classified by CHD severity according to Warnes et al. [27] into simple (n = 162, 10.9%), moderate (n = 686, 46.2%), and complex (n = 415, 27.9%). For a further 223 patients (15.0%), insufficient medical data were available for classification, but these were nevertheless included in analyses in which no distinction was made between severity levels. Table 1 summarises the sociodemographic characteristics of the overall sample and each CHD severity group.

3.2. Use of Psychological, Psychotherapeutic, or Psychiatric Treatment

A total of 32.8% stated that they are currently undergoing and/or have previously undergone PST. However, 67.2% of respondents stated that they had never received such treatment. Treatment was used more frequently by women than by men (37.5% vs. 25.3%). At the time of the survey, 5.1% were on a waiting list for psychotherapy.

3.2.1. Comparison Between CHD Severity Levels

Of the patients with simple CHD, 25.3% stated that they had received appropriate treatment at the time of the survey and/or previously, compared with 29.6% of patients with moderate CHD and 40.2% of those with complex CHD. Chi-square tests revealed a significant difference between simple and complex (p = 0.009) and moderate and complex (p = 0.003) CHD severity, while there was no significant difference between simple and moderate (p = 0.747) CHD severity regarding treatment use. Figure 1 displays the use of mental health treatment depending on CHD severity.

3.2.2. Treatment Reasons

A total of 41.7% reported mental illness as the reason for undergoing PST, while 37.2% attributed their treatment to CHD. Additionally, 32.6% mentioned home or family issues, 25.3% pointed to education or work concerns, and 9.2% referred to influences from colleagues or friends. Furthermore, 28.1% indicated reasons beyond these categories. Multiple answers were possible. Figure 2 illustrates the treatment reasons for each CHD severity level.

3.2.3. Treatment Initiation

In total, 45.8% of respondents initiated treatment independently. In 30.8% of cases, treatment was initiated by a doctor and in 19.9% of cases, friends or family were the initiator. In 3.5% of cases, treatment was initiated by another person or institution.

3.2.4. Practitioner

Overall, 78.6% were treated by a psychologist or psychotherapist. In 15.6% of cases, treatment was provided by a doctor. In 5.7% of cases, treatment was carried out by a person with other qualifications.

3.2.5. Mental Health Treatment and Illness Identity

ACHD who were receiving PST at the time of the survey reported a significantly worse illness identity in the dimensions of engulfment (p < 0.001, 95%-CI: [−0.71, −0.45]), rejection (p < 0.001, 95%-CI: [−0.37, −0.14]), and acceptance (p < 0.001, 95%-CI: [0.20, 0.40]) compared to those who were not in treatment. There were no significant differences in the dimension of enrichment (p = 0.431, 95%-CI: [−0.09, 0.21]). Table 2 displays the descriptive values of illness identity for the two subgroups.

3.2.6. Predictors of PST

Binary logistic regression revealed CHD severity as a further significant factor (reference complex: p < 0.001, simple: p = 0.001, B = −0.740, OR = 0.477, 95%-CI: [0.307, 0.742], moderate: p = 0.003, B = −0.419, OR = 0.658, 95%-CI: [0.498, 0.869] in predicting the use of PST when controlling for sex (reference male: p < 0.001, B = 0.624, OR = 1.867, 95%-CI: [1.422, 2.451]), age (p = 0.022, B = 0.011, OR = 1.011, 95%-CI: [1.002, 1.021]), education level (reference university: all ps > 0.05), and net income (reference low: p = 0.003, medium: p = 0.012, B = −0.376, OR = 0.687, 95%-CI: [0.512, 0.922]; high: p = 0.002, B = −0.770, OR = 0.463, 95%-CI: [0.285, 0.750]). Nagelkerkes R2 was 0.073. The results of the binary logistic regression can be found in Table 3.

4. Discussion

This study was the first to investigate the utilisation of mental health treatment for ACHD nationwide in Germany, whereas previous studies have mainly focussed on the prevalence of mental illnesses. Our results provide evidence that a significant proportion of ACHD experience mental distress. Approximately one-third are currently and/or previously receiving treatment.
Our study suggests that a more complex CHD is associated with increased utilisation of mental health treatment. CHD severity was a significant predictor in the binary logistic regression when controlling for sociodemographic factors, indicating that a more complex CHD was associated with a higher chance of PST use current and/or in the past. Among the socio-demographic factors, being female, higher age, and lower net income showed a significant association with higher PST use. However, education level was insignificant.
Previous results questioning the relationship between medical aspects and mental health are controversial. Studies with German samples mainly report no significant association between CHD severity and anxiety or depression symptoms [19,20]. Some other trials with international samples report correlations between symptoms of depression and anxiety and CHD complexity, which are usually inferior in multivariate analyses due to the effect of the NYHA class [14,32,33,34]. Considering the functional status, studies only partially report a significant correlation between NYHA class and mood or anxiety disorders [6,15]. For other mental illnesses such as personality disorders, the NYHA class was found to be insignificant [18]. Moreover, in their review, Moons et al. [6] report no evidence for a significant influence of the NYHA class in the context of eating disorders, post-traumatic stress disorders, or schizophrenia. In addition, the methodological validity of the measurement of functional status with the NYHA class has been criticised in some studies, as it is considered subjective and has poor interrater reproducibility [35,36,37]. In view of the study situation, neither the relationship between CHD severity nor the NYHA class therefore appears to be robust across all mental illnesses. Although the literature, especially German samples, does not predominantly indicate a strong association between CHD complexity and depression or anxiety, our results show differences in the use of PST depending on CHD severity. In conjunction with previous studies, our results therefore suggest that the utilisation of mental health treatment does not necessarily correlate with the level of psychological distress but may be influenced by other factors such as better integration into the healthcare system and lower barriers to accessing treatment. Overall, the logistic regression model showed a rather small variance explanation, so that other potential predictors for the utilisation of PST, such as functional status, should be taken into account in further studies.
A potential hypothesis for the increased use of mental health treatment among people with complex CHD might be that this patient group is less afraid of stigmatisation because they are already confronted with a severe illness. Seeking help to maintain health may have become the norm for these individuals, reducing mental barriers associated with mental health treatments. As hypothesised above, people with complex CHD may be better integrated into the healthcare system, making it easier for them to access PST. This would emphasise the need to offer targeted psychosocial treatment to individuals with simple and moderate CHD and to make it easier for them to access psychotherapy. It should also be noted that we did not look at specific mental illnesses in this study, as it was the case in the previously mentioned studies about mental health in ACHD.
The CHD itself was the second most frequently cited reason for seeking treatment when looking at the overall sample. For those with complex CHD, the CHD was the most frequently cited reason, ahead of mental illness itself. In comparison, individuals with simple and moderate CHD severity cited the CHD itself as the second most common reason for treatment, while mental illness was stated as the most common treatment reason. Considering the concept of illness identity, which describes how strongly individuals identify with their chronic illness and what role it plays in their self-image, it could be assumed that individuals with complex CHD identify more strongly with their illness, compared to patients with simple or moderate complexity. This hypothesis is supported by a study highlighting that people with complex CHD feel more engulfed by the CHD than those with lower disease complexity [31]. This, in turn, could lead to the psychological burden being attributed more to CHD, both by those affected themselves and possibly by the environment or medical professionals. As discussed above, the concept of stigmatisation might also play a central role in this context. As patients with less complex CHD are generally less integrated into the medical system, there may be a higher threshold for discussing psychological problems in connection with the physical illness. As a result, psychological and somatic challenges may be viewed as separate issues.
Although there are studies which show that the QoL of CHD patients is sometimes as good or better than that of healthy control subjects [5,38], our findings suggest that the CHD itself can nevertheless be a significant burden in the lives of those affected. This underscores that the emotional distress associated with CHD is of great importance and should definitely be taken into account for comprehensive treatment.
Overall, the literature to date calls for further research and longitudinal studies to better understand the exact cognitive and emotional mechanisms behind this. One starting point is the finding that QoL is rated as good or better than that of healthy controls when it comes to life satisfaction per se. When QoL is measured as physical functioning, the more complex the CHD, the worse CHD patients describe their QoL [5]. If the functional status is taken into account, from a comprehensive psychophysical perspective, it seems important to consider that the CHD could become a perpetuating factor for other psychological stress due to the limited physical resilience. The limited exercise capacity might consequently lead to increased avoidance and social withdrawal behaviour. Further longitudinal studies should follow in order to better explain the mechanisms of action.
Our results emphasise the important role of treating physicians in the context of mental health care. Over 30% of those surveyed stated that PST was initiated by their doctor. In just under half of the cases, treatment was initiated by the patients themselves. In order to guarantee a holistic treatment approach, we therefore also encourage the treating cardiologists and ACHD-physicians to directly address the psychological well-being of the patients and thus, initiate the potential utilisation of a support service.
ACHD who were undergoing PST at the time of the survey showed a more maladaptive illness identity (more rejection and engulfment, less acceptance). This could indicate that a problematic illness identity is associated with greater psychological stress, which may increase the need for psychotherapeutic/psychiatric support. These results are in line with previous findings [21]. Alternatively, it could also be that patients with greater psychological distress are more likely to develop a negative illness identity. As this is a cross-sectional study, no cause-and-effect relationship can be established and further studies are necessary. Nevertheless, our results confirm that illness identity should be taken into account in the context of mental illness and psychological distress in ACHD and should also play a central role in appropriate mental health treatment.
Although this study provides valuable insights into the utilisation of mental health treatment and mental stress experienced among ACHD in Germany, some limitations must be considered. First, the cross-sectional design of this study restricts the ability to draw causal inferences about the relationship between CHD severity and the use of PST. Longitudinal studies would be necessary to better understand how the utilisation of mental health care evolves over time in this patient group. Second, this study relied on self-reported data, which may be subject to recall bias or social desirability bias, as participants may not accurately report their treatment history or reasons for seeking care. Third, the study sample is derived from the NRCHD, which may limit generalisability to the broader ACHD population, particularly outside of Germany. Patients with insufficient information regarding CHD severity classification and net income were excluded from the relevant statistical analyses. Despite this exclusion, the final sample size remained sufficiently large to ensure analytical robustness. We note that future studies should incorporate alternative recruitment methods—such as telephone outreach or in-clinic enrolment—to ensure inclusion of harder-to-reach patients without reliable internet access. Moreover, prospective research across diverse healthcare settings is needed to assess the stability and wider applicability of our findings over time. Additionally, the absence of a control group, such as individuals without CHD, restricts our ability to compare mental health treatment utilisation between those with and without the CHD condition. As there was no direct patient contact in our study, we were unfortunately unable to include functional capacity, even though the literature indicates that there may be correlations here in the context of psychological stress and QoL. Finally, the data collection period was limited to the first quarter of 2024, and the findings may not reflect changes in treatment utilisation or mental health trends beyond that timeframe.

Clinical Implications and Actionable Recommendations

For clinical practice, our results emphasise the need for increased interdisciplinary and multidisciplinary collaboration between cardiologists and psychologists, psychotherapists, or psychiatrists. The integration of psychosocial treatment services in ACHD-specialised centres could ideally lower the inhibition threshold for initiating and using mental health services. Specifically, our results further support the hypothesis that psychosocial counsellors working with this patient group should have a basic understanding and background knowledge of the chronic illness and CHD-related stressors in order to provide patients with the best possible support, also with regard to the concept of illness identity. The idea of psychological services integrated into cardiological treatment is also explicitly promoted in a meta-analysis on mental health interventions in ACHD [8].
In order to systematically consider psychosocial stress factors in the care of ACHD, routine screening for psychological distress and maladaptive illness identity should be performed. Validated short questionnaires such as the Patient Health Questionnaire-9 (PHQ-9; [39]) for recording depressive symptoms, the Generalised Anxiety Disorder Scale-7 (GAD-7; [40]) for recording anxiety symptoms, and the Illness Identity Questionnaire (IIQ; [22]) for assessing individual disease management offer a practicable option for the standardised recording of relevant psychosocial parameters in everyday clinical practice [20]. The integration of these instruments into ACHD outpatient clinics—ideally at defined points in time such as initial presentation, follow-up appointments, or in the event of clinical deterioration—makes it possible to identify vulnerable patients at an early stage. The data collected can be used specifically to determine the indications for further psychocardiological or psychosocial interventions and thus, contribute to holistic, patient-centred care. In addition, medical and nursing staff should be trained in the use of the instruments and in communicating the sensitive results in order to ensure adequate interpretation and therapeutic utilisation of the screening findings.
To reduce barriers, cardiologists should routinely ask their patients proactively about their mental state. Psychoeducational information from cardiologists about the increased risk of suffering from a mental illness with CHD might also counteract stigmatisation and simplify the first step towards psychological treatment. Ideally, doctors should have information material on psychosocial treatment programs which can be handed out if there are signs of psychological burden. Additionally, our findings suggest that individuals with more complex CHD may be more likely to seek mental health treatment due to better integration into the healthcare system, highlighting the importance of making mental health services accessible to all ACHD patients, regardless of disease severity.
For the specific psychological treatment of mental disorders in chronic illnesses, some studies suggest the approach of cognitive behavioural therapy (CBT). By adapting CBT to chronic illnesses, several goals can be pursued: in addition to providing psychoeducation on the link between chronic illness and mental stress, therapy can focus on restructuring illness-related cognitions, developing strategies for rest and recovery management, and strengthening personal resources [41,42]. Although studies on psychotherapeutic interventions for ACHD are still sparse [43,44] and the concept of illness identity is not yet addressed in this context, results from the U.S., for example, underscore that cognitive therapy, as well as skills training, can reduce symptoms of emotional distress in ACHD [45]. The concept of the ‘sense of coherence’ (SOC), originating from positive psychology approaches and describing the feeling that life is understandable, manageable and meaningful, has also already been introduced as a potential therapeutic starting point [6]. The SOC has already been linked to perceived health and quality of life in people with CHD, and is seen as a protective factor which may therefore play an important role in the context of illness identity and coping with the disease [46,47,48,49].

5. Conclusions

This study provides important evidence on the utilisation of mental health treatment among ACHD in Germany and comprises a large sample. It highlights the significant mental health challenges faced by ACHD patients, with approximately one-third of the participants reporting current and/or previous psychological treatment. The findings indicate that the severity of CHD is a factor influencing the likelihood of receiving mental health care, with individuals with more complex CHD being more likely to seek treatment, also when controlling for sociodemographic characteristics. Furthermore, the emotional distress associated with CHD itself is reported as a key reason for seeking psychological support, emphasising the need for a comprehensive approach to care that addresses both the physical and psychological well-being of ACHD patients. Additionally, our results indicate that illness identity is associated with psychological distress in ACHD, providing a potential starting point for tailored interventions. Our results underscore the importance of integrating mental health care into the clinical management of ACHD, especially in order to also include patients with simple and moderate CHD, and call for increased awareness and accessibility of psychological support services for this vulnerable patient group.

Author Contributions

Conceptualisation, A.-L.E., P.C.H., and C.P.; methodology, A.-L.E. and P.C.H.; software, A.-L.E. and P.C.H.; validation, A.-L.E., P.C.H., and C.P.; formal analysis, A.-L.E. and P.C.H.; investigation, A.-L.E., P.C.H., and C.P.; resources, P.C.H., F.B., and U.M.M.B.; data curation, A.-L.E. and P.C.H.; writing original draft preparation, A.-L.E.; writing review and editing, A.-L.E., P.C.H., C.P., E.S., J.S., F.B., K.S., and U.M.M.B.; visualisation, A.-L.E. and P.C.H.; supervision, P.C.H. and C.P.; project administration, P.C.H. and C.P.; funding acquisition, A.-L.E. and C.P. All authors have read and agreed to the published version of the manuscript.

Funding

This work was supported by the Deutsche Herzstiftung e.V., with Anna-Lena Ehmann receiving a scholarship for her doctorate. The funder was not involved in the study design, collection, analysis, data interpretation, writing of this article, or the decision to submit it for publication.

Institutional Review Board Statement

This study was conducted in accordance with the Declaration of Helsinki, and approved by the Ethics Committee of Charité Berlin (EA4/178/22, 24 October 2022). The data infrastructure management of the NRCHD is registered with the Berlin Commissioner for Data Protection and Freedom of Information (Registration No. 531.390).

Informed Consent Statement

Informed consent was obtained from all subjects involved in this study.

Data Availability Statement

Data cannot be shared for data protection reasons.

Acknowledgments

Sincere gratitude to the Deutsche Herzstiftung e.V. for their financial support, which has been instrumental in enabling our first author, Anna-Lena Ehmann, to dedicate her time and efforts to this research.

Conflicts of Interest

The authors declare no conflicts of interest.

References

  1. Wu, W.; He, J.; Shao, X. Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990-2017. Medicine 2020, 99, e20593. [Google Scholar] [CrossRef] [PubMed]
  2. Moons, P.; Bovijn, L.; Budts, W.; Belmans, A.; Gewillig, M. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010, 122, 2264–2272. [Google Scholar] [CrossRef]
  3. Shekhar, S.; Agrawal, A.; Pampori, A.; Lak, H.; Windsor, J.; Ramakrishna, H. Mortality in Adult Congenital Heart Disease: Analysis of Outcomes and Risk Stratification. J. Cardiothorac. Vasc. Anesth. 2022, 36 Pt B, 3379–3388. [Google Scholar] [CrossRef]
  4. Liu, A.; Diller, G.P.; Moons, P.; Daniels, C.J.; Jenkins, K.J.; Marelli, A. Changing epidemiology of congenital heart disease: Effect on outcomes and quality of care in adults. Nat. Rev. Cardiol. 2023, 20, 126–137. [Google Scholar] [CrossRef] [PubMed]
  5. Moons, P.; Luyckx, K. Quality-of-life research in adult patients with congenital heart disease: Current status and the way forward. Acta Paediatr. 2019, 108, 1765–1772. [Google Scholar] [CrossRef]
  6. Moons, P.; Van Bulck, L.; Daelman, B.; Luyckx, K. Mental health in adult congenital heart disease. Int. J. Cardiol. Congenit. Heart Dis. 2023, 12, 100455. [Google Scholar] [CrossRef]
  7. Amin, K.; Patel, K. Role of Psychologists in Pediatric Congenital Heart Disease. Pediatr. Clin. N. Am. 2022, 69, 865–878. [Google Scholar] [CrossRef]
  8. Kovacs, A.H.; Brouillette, J.; Ibeziako, P.; Jackson, J.L.; Kasparian, N.A.; Kim, Y.Y.; Livecchi, T.; Sillman, C.; Kochilas, L.K. Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease: A Scientific Statement From the American Heart Association. Circ. Cardiovasc. Qual. Outcomes 2022, 15, e000110. [Google Scholar] [CrossRef] [PubMed]
  9. Nagdyman, N.; Huntgeburth, M.; Hager, A.; Neidenbach, R.; Ewert, P.; Kaemmerer, H. Belastungen bei Erwachsenen mit angeborenen Herzfehlern (EMAH): Sport, Beruf, Familienplanung und Schwangerschaft. Herzmedizin 2016, 5, 16–26. [Google Scholar]
  10. Gleason, L.P.; Deng, L.X.; Khan, A.M.; Drajpuch, D.; Fuller, S.; Ludmir, J.; Mascio, C.E.; Partington, S.L.; Tobin, L.; Kim, Y.Y.; et al. Psychological distress in adults with congenital heart disease: Focus beyond depression. Cardiol. Young 2019, 29, 185–189. [Google Scholar] [CrossRef]
  11. Yang, H.L.; Chang, N.T.; Wang, J.K.; Lu, C.W.; Huang, Y.C.; Moons, P. Comorbidity as a mediator of depression in adults with congenital heart disease: A population-based cohort study. Eur. J. Cardiovasc. Nurs. 2020, 19, 732–739. [Google Scholar] [CrossRef] [PubMed]
  12. Westhoff-Bleck, M.; Briest, J.; Fraccarollo, D.; Hilfiker-Kleiner, D.; Winter, L.; Maske, U.; Busch, M.A.; Bleich, S.; Bauersachs, J.; Kahl, K.G. Mental disorders in adults with congenital heart disease: Unmet needs and impact on quality of life. J. Affect. Disord. 2016, 204, 180–186. [Google Scholar] [CrossRef] [PubMed]
  13. Jackson, J.L.; Leslie, C.E.; Hondorp, S.N. Depressive and Anxiety Symptoms in Adult Congenital Heart Disease: Prevalence, Health Impact and Treatment. Prog. Cardiovasc. Dis. 2018, 61, 294–299. [Google Scholar] [CrossRef]
  14. Kovacs, A.H.; Luyckx, K.; Thomet, C.; Budts, W.; Enomoto, J.; Sluman, M.A.; Lu, C.-W.; Jackson, J.L.; Khairy, P.; Cook, S.C.; et al. Anxiety and Depression in Adults With Congenital Heart Disease. J. Am. Coll. Cardiol. 2024, 83, 430–441. [Google Scholar] [CrossRef]
  15. Kovacs, A.; Saidi, A.; Kuhl, E.; Sears, S.; Silversides, C.; Harrison, J.L.; Ong, L.; Colman, J.; Oechslin, E.; Nolan, R. Depression and anxiety in adult congenital heart disease: Predictors and prevalence. Int. J. Cardiol. 2009, 137, 158–164. [Google Scholar] [CrossRef]
  16. Deng, L.X.; Khan, A.M.; Drajpuch, D.; Fuller, S.; Ludmir, J.; Mascio, C.E.; Partington, S.L.; Qadeer, A.; Tobin, L.; Kovacs, A.H.; et al. Prevalence and Correlates of Post-traumatic Stress Disorder in Adults With Congenital Heart Disease. Am. J. Cardiol. 2016, 117, 853–857. [Google Scholar] [CrossRef] [PubMed]
  17. Freiberger, A.; Richter, C.; Huber, M.; Beckmann, J.; Freilinger, S.; Kaemmerer, H.; Ewert, P.; Kohls, N.; Henningsen, P.; Allwang, C.; et al. Post-Traumatic Distress in Adults With Congenital Heart Disease: An Under-Recognized Complication? Am. J. Cardiol. 2023, 203, 9–16. [Google Scholar] [CrossRef]
  18. Stapel, B.; Winter, L.; Heitland, I.; Löffler, F.; Bauersachs, J.; Westhoff-Bleck, M.; Kahl, K.G. Impact of congenital heart disease on personality disorders in adulthood. Eur. J. Prev. Cardiol. 2024, 31, 1324–1332. [Google Scholar] [CrossRef]
  19. Lebherz, C.; Frick, M.; Panse, J.; Wienstroer, P.; Brehmer, K.; Kerst, G.; Marx, N.; Mathiak, K.; Hövels-Gürich, H. Anxiety and Depression in Adults With Congenital Heart Disease. Front. Pediatr. 2022, 10, 906385. [Google Scholar] [CrossRef]
  20. Ehmann, A.L.; Schütte, E.; Semmler, J.; Berger, F.; Bauer, U.M.M.; Schmitt, K.; Pfitzer, C.; Helm, P.C. Enhancing Mental Health in Adults with Congenital Heart Disease: Comparison of Depression and Anxiety Screening Tools. Eur. J. Cardiothorac. Surg. 2025, 67, ezaf145. [Google Scholar] [CrossRef]
  21. Andonian, C.; Beckmann, J.; Ewert, P.; Freilinger, S.; Kaemmerer, H.; Oberhoffer-Fritz, R.; Sack, M.; Neidenbach, R. Assessment of the Psychological Situation in Adults with Congenital Heart Disease. J. Clin. Med. 2020, 9, 779. [Google Scholar] [CrossRef] [PubMed]
  22. Oris, L.; Rassart, J.; Prikken, S.; Verschueren, M.; Goubert, L.; Moons, P.; Berg, C.A.; Weets, I.; Luyckx, K. Illness Identity in Adolescents and Emerging Adults With Type 1 Diabetes: Introducing the Illness Identity Questionnaire. Diabetes Care 2016, 39, 757–763. [Google Scholar] [CrossRef]
  23. Müller, J.; Hess, J.; Hager, A. Minor symptoms of depression in patients with congenital heart disease have a larger impact on quality of life than limited exercise capacity. Int. J. Cardiol. 2012, 154, 265–269. [Google Scholar] [CrossRef] [PubMed]
  24. Daré, L.O.; Bruand, P.E.; Gérard, D.; Marin, B.; Lameyre, V.; Boumédiène, F.; Preux, P.M. Co-morbidities of mental disorders and chronic physical diseases in developing and emerging countries: A meta-analysis. BMC Public Health 2019, 19, 304. [Google Scholar] [CrossRef]
  25. Roseman, A.; Kovacs, A.H. Anxiety and Depression in Adults with Congenital Heart Disease: When to Suspect and How to Refer. Curr. Cardiol. Rep. 2019, 21, 145. [Google Scholar] [CrossRef]
  26. Andonian, C.; Beckmann, J.r.; Biber, S.; Ewert, P.; Freilinger, S.; Kaemmerer, H.; Oberhoffer, R.; Pieper, L.; Neidenbach, R.C. Current research status on the psychological situation of adults with congenital heart disease. Cardiovasc. Diagn. Ther. 2018, 8, 799–804. [Google Scholar] [CrossRef] [PubMed]
  27. Warnes, C.A.; Williams, R.G.; Bashore, T.M.; Child, J.S.; Connolly, H.M.; Dearani, J.A.; Del Nido, P.; Fasules, J.W.; Graham, T.P., Jr.; Hijazi, Z.M.; et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: A report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J. Am. Coll. Cardiol. 2008, 52, e143–e263. [Google Scholar] [CrossRef]
  28. Jacobs, J.P.; Franklin, R.C.G.; Béland, M.J.; Spicer, D.E.; Colan, S.D.; Walters, H.L., 3rd; Bailliard, F.; Houyel, L.; St Louis, J.D.; Lopez, L.; et al. Nomenclature for Pediatric and Congenital Cardiac Care: Unification of Clinical and Administrative Nomenclature—The 2021 International Paediatric and Congenital Cardiac Code (IPCCC) and the Eleventh Revision of the International Classification of Diseases (ICD-11). World J. Pediatr. Congenit. Heart Surg. 2021, 12, E1–E18. [Google Scholar] [CrossRef]
  29. Van Bulck, L.; Goossens, E.; Luyckx, K.; Oris, L.; Apers, S.; Moons, P. Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease. J. Am. Heart Assoc. 2018, 7, e008723. [Google Scholar] [CrossRef]
  30. Oris, L.; Luyckx, K.; Rassart, J.; Goubert, L.; Goossens, E.; Apers, S.; Arat, S.; Vandenberghe, J.; Westhovens, R.; Moons, P. Illness Identity in Adults with a Chronic Illness. J. Clin. Psychol. Med. Settings 2018, 25, 429–440. [Google Scholar] [CrossRef]
  31. Van Bulck, L.; Goossens, E.; Apers, S.; Moons, P.; Luyckx, K. Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient-reported outcomes and healthcare use. J. Adv. Nurs. 2021, 77, 4743–4754. [Google Scholar] [CrossRef]
  32. Moons, P.; Kovacs, A.H.; Luyckx, K.; Thomet, C.; Budts, W.; Enomoto, J.; Sluman, M.A.; Yang, H.-L.; Jackson, J.L.; Khairy, P.; et al. Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors. Int. J. Cardiol. 2018, 251, 34–41. [Google Scholar] [CrossRef]
  33. Moons, P.; Luyckx, K.; Thomet, C.; Budts, W.; Enomoto, J.; Sluman, M.A.; Lu, C.-W.; Jackson, J.L.; Khairy, P.; Cook, S.C.; et al. Physical Functioning, Mental Health, and Quality of Life in Different Congenital Heart Defects: Comparative Analysis in 3538 Patients From 15 Countries. Can. J. Cardiol. 2021, 37, 215–223. [Google Scholar] [CrossRef] [PubMed]
  34. Roseman, A.; Morton, L.; Kovacs, A.H. Health anxiety among adults with congenital heart disease. Curr. Opin. Cardiol. 2021, 36, 98–104. [Google Scholar] [CrossRef] [PubMed]
  35. Raphael, C.; Briscoe, C.; Davies, J.; Ian Whinnett, Z.; Manisty, C.; Sutton, R.; Mayet, J.; Francis, D.P. Limitations of the New York Heart Association functional classification system and self-reported walking distances in chronic heart failure. Heart 2007, 93, 476–482. [Google Scholar] [CrossRef] [PubMed]
  36. Yap, J.; Lim, F.Y.; Gao, F.; Teo, L.L.; Lam, C.S.; Yeo, K.K. Correlation of the New York Heart Association Classification and the 6-Minute Walk Distance: A Systematic Review. Clin. Cardiol. 2015, 38, 621–628. [Google Scholar] [CrossRef]
  37. Rohde, L.E.; Zimerman, A.; Vaduganathan, M.; Claggett, B.L.; Packer, M.; Desai, A.S.; Zile, M.; Rouleau, J.; Swedberg, K.; Lefkowitz, M.; et al. Associations Between New York Heart Association Classification, Objective Measures, and Long-term Prognosis in Mild Heart Failure: A Secondary Analysis of the PARADIGM-HF Trial. JAMA Cardiol. 2023, 8, 150–158. [Google Scholar] [CrossRef]
  38. Bertoletti, J.; Marx, G.C.; Hattge, S.P.; Pellanda, L.C. Quality of life and congenital heart disease in childhood and adolescence. Arq. Bras. Cardiol. 2014, 102, 192–198. [Google Scholar] [CrossRef]
  39. Kroenke, K.; Spitzer, R.L.; Williams, J.B. The PHQ-9: Validity of a brief depression severity measure. J. Gen. Intern. Med. 2001, 16, 606–613. [Google Scholar] [CrossRef]
  40. Williams, N. The GAD-7 questionnaire. Occup. Med. 2014, 64, 224. [Google Scholar] [CrossRef]
  41. Morey, A.; Loades, M.E. Review: How has cognitive behaviour therapy been adapted for adolescents with comorbid depression and chronic illness? A scoping review. Child Adolesc. Ment. Health 2021, 26, 252–264. [Google Scholar] [CrossRef] [PubMed]
  42. van Beugen, S.; Ferwerda, M.; Hoeve, D.; Rovers, M.M.; Spillekom-van Koulil, S.; van Middendorp, H.; Evers, A.W. Internet-based cognitive behavioral therapy for patients with chronic somatic conditions: A meta-analytic review. J. Med. Internet Res. 2014, 16, e88. [Google Scholar] [CrossRef]
  43. Leo, D.G.; Islam, U.; Lotto, R.R.; Lotto, A.; Lane, D.A. Psychological interventions for depression in adolescent and adult congenital heart disease. Cochrane Database Syst. Rev. 2023, 10, Cd004372. [Google Scholar] [CrossRef] [PubMed]
  44. Tesson, S.; Butow, P.N.; Sholler, G.F.; Sharpe, L.; Kovacs, A.H.; Kasparian, N.A. Psychological interventions for people affected by childhood-onset heart disease: A systematic review. Health Psychol. 2019, 38, 151–161. [Google Scholar] [CrossRef]
  45. Ferguson, M.; Kovacs, A.H. An Integrated Adult Congenital Heart Disease Psychology Service. Congenit. Heart Dis. 2016, 11, 444–451. [Google Scholar] [CrossRef]
  46. Coutinho, V.M.; Araújo, G.L.; Lyra, M.C.A.; Rosenblatt, A.; Heimer, M.V. Sense of coherence and quality of life in adolescents with heart disease. Rev. Paul. Pediatr. 2022, 40, e2021104. [Google Scholar] [CrossRef] [PubMed]
  47. Moons, P.; Apers, S.; Kovacs, A.H.; Thomet, C.; Budts, W.; Enomoto, J.; Sluman, M.A.; Wang, J.K.; Jackson, J.L.; Khairy, P.; et al. Sense of coherence in adults with congenital heart disease in 15 countries: Patient characteristics, cultural dimensions and quality of life. Eur. J. Cardiovasc. Nurs. 2021, 20, 48–55. [Google Scholar] [CrossRef]
  48. Apers, S.; Luyckx, K.; Rassart, J.; Goossens, E.; Budts, W.; Moons, P. Sense of coherence is a predictor of perceived health in adolescents with congenital heart disease: A cross-lagged prospective study. Int. J. Nurs. Stud. 2013, 50, 776–785. [Google Scholar] [CrossRef]
  49. Müller, J.; Hess, J.; Hager, A. Sense of coherence, rather than exercise capacity, is the stronger predictor to obtain health-related quality of life in adults with congenital heart disease. Eur. J. Prev. Cardiol. 2014, 21, 949–955. [Google Scholar] [CrossRef]
Jcdd 12 00231 g001
Figure 1. Use of psychological, psychotherapeutic, or psychiatric treatment (PST) depending on CHD severity. For 223 patients, insufficient medical data were available for CHD classification (‘no class’), of which 34.1% were undergoing PST current and/or previously.
Figure 1. Use of psychological, psychotherapeutic, or psychiatric treatment (PST) depending on CHD severity. For 223 patients, insufficient medical data were available for CHD classification (‘no class’), of which 34.1% were undergoing PST current and/or previously.
Jcdd 12 00231 g001
Jcdd 12 00231 g002
Figure 2. Reasons for psychological, psychotherapeutic, or psychiatric treatment (PST) depending on CHD severity. Multiple answers were possible, so percentages are not mutually exclusive. Chi-square tests were conducted for group comparisons between CHD severity levels. ° p > 0.05, * p < 0.001. For 223 patients, insufficient medical data were available for CHD classification (‘no class’). This subgroup was not included in the statistical analyses for this illustration.
Figure 2. Reasons for psychological, psychotherapeutic, or psychiatric treatment (PST) depending on CHD severity. Multiple answers were possible, so percentages are not mutually exclusive. Chi-square tests were conducted for group comparisons between CHD severity levels. ° p > 0.05, * p < 0.001. For 223 patients, insufficient medical data were available for CHD classification (‘no class’). This subgroup was not included in the statistical analyses for this illustration.
Jcdd 12 00231 g002
Table 1. Demographic characteristics of the total sample and by CHD severity level.
Table 1. Demographic characteristics of the total sample and by CHD severity level.
Demographic DataTotal
Sample
(N = 1486)		CHD
Simple
(n = 162)		CHD
Moderate
(n = 686)		CHD
Complex
(n = 415)		CHD
No Class
(n = 223)
Age in years, M (SD)36.8 (14.6)33.2 (15.0)38.2 (14.6)34.1 (12.8)40.3 (15.9)
Gender, n (%)
   Male 580 (39.0)47 (29.0)291 (42.4)163 (39.3)79 (35.4)
   Female903 (60.8)115 (71.0)395 (57.6)249 (60.0)144 (64.6)
   Non-Binary 3 (0.2)0 (0)0 (0)3 (0.7)0 (0)
Relationship status, n (%)
   Single 542 (36.5)59 (36.4)228 (33.2)180 (43.4)75 (33.6)
   In a relationship/married944 (63.5)103 (63.6)458 (66.8)235 (56.6)148 (66.4)
Number of school years, M (SD)11.40 (1.53)11.44 (1.34)11.39 (1.51)11.35 (1.69)11.47 (1.43)
Education, n (%)
   Without degree36 (2.4)4 (2.5)16 (2.3)13 (3.1)3 (1.3)
   Pupil42 (2.8)5 (3.1)19 (2.8)14 (3.4)4 (1.8)
   Elementary school
       (9 years)		68 (4.6)2 (1.2)31 (4.5)25 (6.0)10 (4.5)
   Secondary school
       (10 years)		147 (9.9)18 (11.1)60 (8.7)43 (10.4)26 (11.7)
   Completed
       apprenticeship		297 (20.0)23 (14.2)144 (21.0)87 (21.0)43 (19.3)
   Advanced technical
       college		148 (10.0)23 (14.2)63 (9.2)39 (9.4)23 (10.3)
   High school diploma247 (16.6)28 (17.3)115 (16.8)58 (14.0)46 (20.6)
   University501 (33.7)59 (36.4)238 (34.7)136 (32.8)68 (30.5)
Employment, n (%)
   In education310 (20.9)50 (30.9)130 (19.0)88 (21.2)41 (18.4)
   Working full-time601 (40.4)63 (38.9)303 (44.2)153 (36.9)82 (36.8)
   Working part-time328 (22.1)34 (21.0)138 (20.1)103 (24.8)53 (23.8)
   Self-employed 77 (5.2)7 (4.3)39 (5.7)18 (4.3)13 (5.8)
   Jobseeker26 (1.7)3 (1.9)11 (1.6)7 (1.7)5 (2.2)
   Retired 179 (12.0)10 (6.2)80 (11.7)54 (13.0)35 (15.7)
   Other 84 (5.7)7 (4.3)36 (5.2)32 (7.7)9 (4.0)
Net income, n (%)
   <1250 €335 (22.5)37 (22.8)142 (20.7)106 (25.5)50 (22.4)
   1250–1749 €188 (12.7)19 (11.7)83 (12.1)56 (13.5)30 (13.5)
   1750–2249 €207 (13.9)22 (13.6)98 (14.3)61 (14.7)26 (11.7)
   2250–2999 €278 (18.7)34 (21.0)131 (19.1)67 (16.1)46 (20.6)
   3000–3999 €162 (10.9)21 (13.0)76 (11.1)45 (10.8)20 (9.0)
   4000–4999 €74 (5.0)3 (1.9)36 (5.2)23 (5.5)12 (5.4)
   ≥5000 €89 (6.0)6 (3.7)52 (7.6)18 (4.3)13 (5.8)
   Not specified153 (10.3)20 (12.3)68 (9.9)39 (9.4)26 (11.7)
PST *, n (%)
   In the past only276 (18.6)24 (14.8)117 (17.1)89 (21.4)46 (20.6)
   Current only79 (5.3)6 (3.7)28 (4.1)28 (6.7)17 (7.6)
   Past and current132 (8.9)11 (6.8)58 (8.5)50 (12.0)13 (5.8)
   No PST999 (67.2)121 (74.7)483 (70.4)248 (59.8)147 (65.9)
Waiting for therapy place °76 (5.1)7 (4.3)30 (4.4)25 (6.0)14 (6.3)
Note. Multiple answers were possible for employment. CHD = congenital heart defects. SD = standard deviation. PST = Psychological, psychotherapeutic, or psychiatric treatment. * Chi-square tests were performed for group comparison and revealed significant differences between CHD severity levels (simple/moderate/complex/no class) in PST use, p < 0.05. ° Chi-square test revealed no significant differences in waiting list status between CHD severity levels, p = 0.380.
Table 2. Descriptive statistics of illness identity dimensions by current PST use (yes vs. no).
Table 2. Descriptive statistics of illness identity dimensions by current PST use (yes vs. no).
Illness Identity DimensionUse of PST at Time of SurveyMean ValueStandard Deviation
EngulfmentNo1.930.78
Yes2.510.91
RejectionNo1.990.90
Yes2.250.77
AcceptanceNo4.160.69
Yes3.860.69
EnrichmentNo3.231.05
Yes3.170.97
Note. N = 1486. PST = Psychological, psychotherapeutic, or psychiatric treatment. PST use ‘no’: n = 1275. PST ‘yes’: n = 211.
Table 3. Results of binary logistic regression predicting PST use (current and/or previous vs. never) based on CHD severity and sociodemographic characteristics.
Table 3. Results of binary logistic regression predicting PST use (current and/or previous vs. never) based on CHD severity and sociodemographic characteristics.
VariablesBSEdfpExp(B)95%-CI
LowerUpper
Constant−0.8060.26410.0020.447
CHD severity (Ref: complex) 2<0.001
 Simple−0.7400.22510.0010.4770.3070.742
 Moderate−0.4190.14210.0030.6580.4980.869
Sex (0 = male)0.6240.1391<0.0011.8671.4222.451
Age0.0110.00510.0221.0111.0021.021
Education level (Ref: University) 70.496
   Without degree−0.3330.44010.4500.1710.3031.698
   Pupil−1.1870.78910.1320.3050.0651.433
   Elementary school (9 years)0.0910.32710.7801.0960.5772.079
   Secondary school (10 years)−0.2340.24610.3420.7910.4881.283
   Completed apprenticeship−0.1730.18210.3420.8410.5891.202
   Advanced technical college−0.720.23210.7550.9300.5901.466
   High school diploma −0.4040.21510.0600.6680.4381.017
Net income (Ref: Low) 20.003
   Medium−0.3760.15010.0120.6870.5120.922
   High−0.7700.24710.0020.4630.2850.750
Note. N = 1136. CHD = congenital heart defects. B = regression coefficient. SE = standard error. Df = degrees of freedom. p = p-value. Exp(B) = exponential B (equals odds ratio). CI = Confidence interval. CHD ‘no class’ (n = 223) were excluded from the logistic regression analysis.
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Ehmann, A.-L.; Schütte, E.; Semmler, J.; Berger, F.; Bauer, U.M.M.; Schmitt, K.; Pfitzer, C.; Helm, P.C. Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons. J. Cardiovasc. Dev. Dis. 2025, 12, 231. https://doi.org/10.3390/jcdd12060231

AMA Style

Ehmann A-L, Schütte E, Semmler J, Berger F, Bauer UMM, Schmitt K, Pfitzer C, Helm PC. Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons. Journal of Cardiovascular Development and Disease. 2025; 12(6):231. https://doi.org/10.3390/jcdd12060231

Chicago/Turabian Style

Ehmann, Anna-Lena, Emily Schütte, Janina Semmler, Felix Berger, Ulrike M. M. Bauer, Katharina Schmitt, Constanze Pfitzer, and Paul C. Helm. 2025. "Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons" Journal of Cardiovascular Development and Disease 12, no. 6: 231. https://doi.org/10.3390/jcdd12060231

APA Style

Ehmann, A.-L., Schütte, E., Semmler, J., Berger, F., Bauer, U. M. M., Schmitt, K., Pfitzer, C., & Helm, P. C. (2025). Mental Health Treatment in Adults with Congenital Heart Disease in Germany: An Online, Cross-Sectional Study of Status, Needs, and Treatment Reasons. Journal of Cardiovascular Development and Disease, 12(6), 231. https://doi.org/10.3390/jcdd12060231

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