Abstract
Mental health issues are common in individuals with congenital heart disease (CHD), stemming from various factors such as traumatic experiences, existential questions, and genetic predisposition. This article provides an overview of the literature on mental disorders and mental health in adults with CHD (ACHD) and presents new data on mental health as a predictor of quality of life (QoL). Empirical data show that disorders such as depression, anxiety, bipolar disorder, psychosis, Attention Deficit Hyperactivity Disorder (ADHD), and autism spectrum disorders occur more often in people with CHD than in healthy counterparts (Graphical abstract). Further, mental health is a strong predictor of QoL. Therefore, psychological interventions should be integrated into CHD care to enhance mental health and QoL of afflicted patients.
Keywords: Heart defect, Congenital, Depression, Anxiety, Mental health, Psychiatric, Psychology
Graphical abstract
1. Introduction
Mental health is a global issue of concern because mental disorders are among the top ten leading causes of burden worldwide [1]. Mental disorders occur in 12% of the global population, with anxiety disorders and major depression as most prevalent conditions [1]. The prevalence of mental disorders is the highest in Australasia, tropical Latin America, and high income North America [1]. Mental disorders are defined by the International Classification of Diseases – 11th revision as “syndromes characterized by clinically significant disturbance in an individual's cognition, emotional regulation, or behavior that reflects a dysfunction in the psychological, biological, or developmental processes that underlie mental and behavioral functioning. These disturbances are usually associated with distress or impairment in personal, family, social, educational, occupational, or other important areas of functioning.” [2] Mental disorders result in substantial disability.
Mental health, however, is a broader concept and goes beyond mental disorders. The World Health Organization defines mental health as “a state of mental well-being that enables people to cope with the stresses of life, to realize their abilities, to learn well and work well, and to contribute to their communities. Mental health is an integral component of health and well-being and is more than the absence of mental disorder.” [3] Hence, mental health includes mental disorders, but it also pertains to pre-clinical symptomatology or positive psychological factors, such as resilience or posttraumatic growth. It may be counterintuitive, but people with mental disorders still can have a good mental health if they are empowered and if they can rely on a strong support system [3].
Mental disorders and mental health issues are more prevalent in people with somatic morbidities than in non-afflicted individuals. About 40% of individuals with chronic physical diseases present with a mental disorder [4,5]. The odds of developing mental disorders in people with physical conditions are 25–300% higher [4,6]. Congenital heart disease is an example of a chronic physical condition that is associated with mental health concerns. Early in life, individuals with CHD may encounter traumatic experiences due to invasive procedures and prolonged intensive care treatments. Growing up with CHD also may trigger existential questions since patients can be confronted with a potentially reduced life expectancy. From this perspective, it is understandable that some patients with CHD develop anxiety disorders or post-traumatic stress disorder (PTSD). Further, there seems to be a genetic predisposition to develop certain mental disorders. Therefore, the aim of this article is to provide an overview of the literature on mental disorders and mental health in adults with CHD (ACHD), and to present some novel data on mental health as a predictor of quality of life (QoL).
2. Mental disorders/health in ACHD
2.1. Depression
Depression is a mood disorder that causes persistent feelings of sadness and loss of interest in things. Depression affects how one feels, thinks, and handles daily activities [7]. In the assessment of depression, it is important to distinguish between the presence of depressive symptoms and the diagnosis of clinical depression. A recent meta-analysis reported a pooled prevalence of actual clinical depression in ACHD of 10.3% (range 0–27.3%; Table 1), and 16.1% had a lifetime episode of depression [8]. When looking at symptoms of depression, the meta-analysis showed that 21.1% of the people with CHD had at least mild depressive symptoms and 10.3% had moderate or severe depressive symptoms [8]. The proportions in these categories were not significantly different from those in the general population [8]. However, when the scores for depressive symptomatology were assessed on a continuous scale (e.g. scale from 0 to 21 for the HADS-depression), the mean scores for people with CHD were higher than those of the general population [8].
Table 1.
The prevalence of mental disorders in ACHD.
| Author, year | Country | Prevalence | |
|---|---|---|---|
| Depression | Holland, 2017 [36] | USA | 0% |
| DeMaso, 2017 [35] | USA | 1.3% | |
| Spurkland, 1993 [69] | Norway | 1.9% | |
| Kasmi, 2018 [21] | France | 3.0% | |
| DeMaso, 2014 [19] | USA | 3.6% | |
| Bhatt, 2015 [70] | USA | 5.9% | |
| Desai, 2020 [71] | USA | 7.0% | |
| Fuller, 2019 [72] | USA | 10.2% | |
| Seckeler, 2018 [73] | USA | 12.2% | |
| Horner, 2000 [74] | USA | 13.8% | |
| Kovacs, 2009 [75] | Canada, USA | 15.5% | |
| Moon, 2017 [76] | South Korea | 19.5% | |
| Westhoff-Bleck, 2016 [24] | Germany | 24.7% | |
| Westhoff-Bleck, 2020 [77] | Germany | 25.7% | |
| Bromberg, 2003 [78] | USA | 27.3% | |
| Anxiety | DeMaso, 2014 [19] | USA | 5.0% |
| Desai, 2020 [71] | USA | 6.5% | |
| Bromberg, 2003 [78] | USA | 9.1% | |
| Westhoff-Bleck, 2016 [24] | Germany | 9.3% | |
| Holland, 2017 [36] | USA | 11.0% | |
| Khanna, 2019 [28] | USA | 11.0% | |
| Spurkland, 1993 [69] | Norway | 13.5% | |
| Kovacs, 2009 [75] | Canada, USA | 17.2% | |
| Moon, 2017 [76] | South Korea | 18.0% | |
| DeMaso, 2017 [35] | USA | 22.4% | |
| Kasmi, 2018 [21] | France | 35.8% | |
| Bipolar disorder | De Maso, 2014 [19] | USA | 0.7% |
| Post-traumatic stress disorder | Kasmi, 2018 [21] | France | 0% |
| Simeone, 2022 [22] | USA | 0.8% | |
| Westhoff-Bleck, 2016 [24] | Germany | 2.7% | |
| Carazo, 2020 [23] | USA | 3.2% | |
| Schizophrenia and psychosis | Udholm, 2019 [79] | Denmark | 1.4% |
| Khanna, 2019 [28] | USA | 1.6% | |
| Singh, 2018 [30] | USA | 4.5% | |
| Attention, conduct, behavior, and impulse control disorders | Khanna, 2019 [28] | USA | 1.3% |
| Tsao, 2017 [33] | Taiwan | 3.8% | |
| De Maso, 2014 [19] | USA | 16% | |
| Holland, 2017 [36] | USA | 23.1% | |
| DeMaso, 2017 [35] | USA | 33.3% | |
| Autism spectrum disorder | Tsao, 2017 [33] | Taiwan | 0.8% |
| Razzaghi, 2015 [39] | USA | 2.6% | |
| Bean Jaworski, 2017 [38] | USA | 3.2% | |
| Eating disorders | DeMaso, 2017 [35] | USA | 0% |
| De Maso, 2014 [19] | USA | 0% | |
| Holland, 2017 [36] | USA | 0% | |
| Hsu, 2021 [20] | Taiwan | 0% | |
| Kasmi, 2018 [21] | France | 2% |
In APPROACH-IS, a large international study on patient-reported outcomes in ACHD [9], depressive symptomatology scores were higher in patients with older age; lower education; job seeking, unemployed, or disability; higher NYHA functional class; and lower levels of disease complexity [10]. This latter may be counterintuitive since patients with cyanotic heart disease or Eisenmenger syndrome have the highest levels of depressive symptoms. However, people with Double Outlet Ventricle or coarctation of the aorta have the lowest levels of depressive symptoms [11].
Most studies on depressive symptoms in ACHD are cross-sectional. However, a longitudinal study demonstrated the importance of assessing persistent or chronic depressive symptoms [12]. Indeed, patients with persisting or recurring depressive symptoms do worse in terms of QoL and patient-reported health than patients who are experiencing one or no depressive episode [12]. This demonstrates the need for regular and longitudinal assessments of depression throughout clinical follow-up.
A dramatic outcome of depression is people committing suicide. Empirical evidence on suicide in people with CHD is scarce [[13], [14], [15], [16], [17]]. Studies in Finland and Belgium found that about 3% of all deaths were due to suicide [14,17]. Two small studies in patients with congenitally corrected transposition of the great arteries (10 patients died) and tetralogy of Fallot (29 patients died) showed that about 10% of the patients who died committed suicide [13,16]. This high proportion is probably the result of the small sample sizes. A Danish study revealed a suicide rate of 0.56% [15]. Since these findings were based on administrative data, it could be questioned if all suicides had been captured.
2.1.1. Anxiety
Another mood disturbance is anxiety disorders, which are characterized by excessive anxiety or worries in the absence of, or out of proportion to, situational factors [7]. A meta-analysis found that 12.7% of patients (range 5.0–35.8%; Table 1) with CHD had a current clinical diagnosis of anxiety disorder, and 23.3% had a lifetime episode of anxiety disorder [8]. When assessing anxiety symptoms using self-report, 42.7% had at least mild anxiety symptoms and 21.9% had moderate or severe anxiety symptoms [8]. These proportions did not differ from the proportions in the general population [8]. But also here, when anxiety scores were expressed on a continuous scale (e.g. scale from 0 to 21 on HADS-anxiety), the mean anxiety scores on the questionnaires were significantly higher in CHD than in the general population [8].
Predictors for higher levels of anxiety symptoms in APPROACH-IS were female sex; younger age; job seeking, unemployed, or disability; and higher NYHA functional class [10,18].
Patients with cyanotic heart disease/Eisenmenger syndrome, or those with univentricular heart reported the highest anxiety symptom scores [11], but this effect disappeared when adjusted for functional status. This shows that the functional status of patients is more important for developing anxiety symptoms than the heart defect itself.
2.1.2. Bipolar disorder
Bipolar disorders are a group of brain disorders that cause extreme fluctuation in a person's mood, energy, and ability to function [7]. Empirical evidence on bipolar disorders in CHD is scarce. In research, bipolar disorders are often pooled with other mood-affective disorders. A study in adolescents with transposition of the great arteries (d-TGA) in the US found that 1 out of 139 patients (0.7%) presented with bipolar disorder [19]. A study in 4206 patients with tetralogy of Fallot in Taiwan found that bipolar disorders occurred in 36.7/100,000 patient years [20]. This rate was 2.4 times higher than in the general Taiwanese population [20].
2.1.3. Post-traumatic stress disorder
Given the potentially traumatic experiences during childhood, it is understandable that some patients with CHD are developing PTSD. The prevalence of PTSD in ACHD has a broad range. In most studies, 0–3.2% of the patients had a diagnosis of PTSD [[21], [22], [23], [24]]. When using questionnaires, the proportion of people with symptoms of PTSD is much higher. Two North-American studies observed symptoms of PTSD in 21–24% [25,26], and one study conducted in Iran detected symptoms of PTSD in 52% of the patients [27]. This suggests that there may be a geographical variation (Table 1) that warrants further research.
2.1.4. Schizophrenia and psychosis
In a large US sample of adolescents and adults with CHD, schizophrenia was diagnosed in 1.6% of the patients [28]. This prevalence was in line with the 1.4% that was found in a Danish cohort of people with small atrial septal defects [29]. Psychosis was an extra-cardiac comorbidity observed in 4.5% of ACHD patients from the US upon hospitalization [30]. In Taiwanese patients with tetralogy of Fallot, psychotic disorders were recorded in 51 per 100,000 patient years [20]. This is 3.1 times higher than in the general population [20].
2.2. Attention, conduct, behavior, and impulse control disorders
Attention Deficit Hyperactivity Disorder (ADHD) and other conduct, behavior, and impulse control disorders are well-investigated in children with CHD. From that research, it is known that ADHD occurs more often in children with cyanotic CHD or single ventricle physiology (SVP) [31,32]. The prevalence of ADHD is higher in children with CHD than in healthy controls [33,34].
A study in 156 adolescents with SVP found that 33.3% had current disruptive behavior disorder, 98% of which had ADHD (32.7% of the sample) [35]. Lifetime disruptive behavior disorders were observed in 38.5% [35]. A similar study was conducted in 139 adolescents with d-TGA, showing 16% had current disruptive behavior disorder, all of which was ADHD [19]. Nineteen percent has had disruptive behavior disorders throughout their lifetime [19]. In 91 adolescents with TOF, 23.1% had current disruptive behavior disorder; 22.0% had current ADHD; and 24.2% had lifetime disruptive behavior disorder [36]. In adolescents with CHD from Taiwan, the proportion of ADHD seems to be lower (3.8%) [33]. This corresponded with 4.55 per 1000 patient years. Nonetheless, the prevalence in adolescents with CHD was higher than in controls [33].
To the best of our knowledge, there is only one study that investigated ADHD in adults with CHD [28]. In a US sample of 6924 adult patients, 1.3% was diagnosed with ADHD [28].
2.2.1. Autism spectrum disorder
CHD and autism spectrum disorders seem to have a convergent molecular network [37]. Indeed, 101 genes have been found that share a genetic risk for both conditions [37]. In adolescents with CHD from Taiwan, autism spectrum disorder was diagnosed in 0.8% [33]. In the US, the prevalence of autism spectrum disorder in CHD seems to be higher, with a rate of 2.6–3.2% [38,39]. Both in the US and Taiwan, the prevalence of autism spectrum disorder is 4–5 times higher in patients with CHD than in controls from the general population [33,39].
2.2.2. Eating disorders
The studies on eating behaviors in CHD used diagnostic interviews or medical claim data. Studies that were conducted in US adolescents with SVP, d-TGA, and tetralogy of Fallot indicated that none of the patients had a history of anorexia nervosa [19,35,36]. A study in French adults with d-TGA showed that 2% had a current, and 3% a lifetime history of eating disorders, which included bulimia and anorexia nervosa [21]. In a large sample of patients with tetralogy of Fallot in Taiwan, no patients have had eating disorders [20].
3. Mental health in the aging ACHD population
The increased longevity in CHD yields a growing group of older people in the ACHD population [40]. In the APPROACH-IS project [9], mental health of patients aged 60 years or older was compared to that of patients aged 18–39 and 40–59 years [18]. Older ACHD patients experienced fewer anxiety symptoms and had a better mental health status [18]. The observation that older individuals tend to have better mental health status and less anxiety is consistent with findings in the general population and other medical conditions [[41], [42], [43], [44]]. Indeed, in the transition from midlife to mid-60s, the levels of anxiety appear to decrease [44]. This may be partly attributed to a phenomenon known as “response shift” [45]. Response shift is a term used to describe how people may change their views or feelings about certain phenomena (e.g. what is important for their QoL) after they had particular experiences. For example, someone who has a chronic illness may adjust their expectations or values over time and feel less anxious than before. Further, it is known that certain brain alterations can induce changes in levels of anxiety. More specifically, degeneration of white matter while aging is related to less anxiety in older adults of the general population [46]. Therefore, it is not surprising that anxiety levels in older patients with CHD is lower than in younger age cohorts. Nonetheless, more research on age-related issues, including mental health, is needed to get sufficient insights into the needs of this emerging population [47].
3.1. Mental health as predictor of quality of life
QoL is largely determined by mental health, and in extension by psychological factors. The aforementioned APPROACH-IS project demonstrated that QoL was associated with mental health (r = 0.58), anxiety (r = −0.45), and depression (r = −0.57) [10]. Other psychological factors that correlated with QoL were self-efficacy [48], sense of coherence [49], illness identity [50], and illness perceptions [51].
Largescale research on the relative contribution of mental health to QoL is lacking. To address this issue in the present article, we performed hierarchical multivariable linear regression analysis on 3693 patients included in APPROACH-IS. The analyses showed that the block of mental health/psychological factors explains 36.3% of the variance of QoL (Table 2). This is considerably more than clinical and demographic factors. These data confirm that mental health/psychological factors are valid targets for intervention, not only to achieve better mental health, but also to yield improvements in QoL. However, the relative contribution of mental health/psychological factors to QoL differs across countries. The explained variance of these factors ranges from 17.7% in Argentina to 51.0% in Sweden (Table 3). Therefore, the QoL benefits of mental health interventions may differ among countries.
Table 2.
Correlates of quality of life in 3693 adults with congenital heart disease.
| Standardized Beta (95% CI) |
|||
|---|---|---|---|
| Model 1 | Model 2 | Model 3 | |
| Complexity of CHD | −0.59 (−2.11 to −0.63)c | −0.08 (−2.52 to −1.05)c | −0.01 (−0.80 – 0.39) |
| Sex | −0.05 (−2.79 to −0.69)c | −0.01 (−1.26 – 0.40) | |
| Age | −0.18 (−0.28 to −0.18)c | −0.13 (−0.22 to −0.13)c | |
| Ethnic background | 0.14 (1.39–2.23)c | 0.04 (0.12–0.80)b | |
| Highest level of education | 0.08 (0.85–1.96)c | −0.003 (−0.50 – 0.38) | |
| Employment status | −0.07 (−1.25 to −0.42)c | −0.005 (−0.40 – 0.26) | |
| Marital status | 0.06 (0.41–2.78)b | 0.04 (0.31–2.18)b | |
| Having children | 0.02 (−0.63 – 2.15) | 0.02 (−0.32 – 1.87) | |
| Symptoms of anxiety | −0.05 (−0.35 to −0.04)a | ||
| Symptoms of depression | −0.29 (−1.65 to −1.30)c | ||
| Illness perceptions | −0.21 (0.23–0.32)c | ||
| Sense of coherence | 0.22 (0.23–0.32)c | ||
| R [2] of the model | 0.4% | 5.4% | 41.7% |
| R [2] change | 0.4% | 5.1% | 36.3% |
p < 0.05.
p < 0.01.
p < 0.001.
Table 3.
Explained variance of mental health/psychological factors on quality of life in 15 countries.
| Country | Explained variance |
|---|---|
| Sweden | 51.0% |
| Japan | 47.8% |
| USA | 43.8% |
| France | 42.2% |
| Norway | 42.2% |
| Italy | 40.8% |
| Malta | 38.4% |
| Switzerland | 36.8% |
| Netherlands | 34.6% |
| Belgium | 30.8% |
| Canada | 30.5% |
| Taiwan | 30.1% |
| Australia | 28.3% |
| India | 23.4% |
| Argentina | 17.7% |
3.2. Positive psychology
When the first studies showing a relatively good QoL in people with CHD were published [52], the concept of resilience entered the field. Resilience refers to a person's ability to properly adapt to stress and adversity [53]. As such, it rather looks at an individual's resources and capacities for adaptive behavior, instead of limitations or maladjustment. This approach is part of the movement of positive psychology, which is the study of optimal human functioning, including identification and promotion of the factors that foster thriving in individuals and communities [54].
A construct from positive psychology that has been thoroughly investigated in CHD is “sense of coherence” (SOC) [49,[55], [56], [57], [58], [59], [60]]. SOC represents an individual's generalized worldview and expresses the extent to which the individual perceives (1) stimuli as structured and predictable (ie, comprehensibility); (2) that resources are available to meet the demands posed by these stimuli (ie, manageability); and (3) that these demands are challenges worthy of investment (ie, meaningfulness) [61]. Individuals with a strong SOC are more able to identify and apply resources to seek a solution to problems or to cope with stressors, compared to those with a weak SOC. The hypothesis that the stressors of growing up with CHD support the development of a stronger SOC [62] has been empirically confirmed [57]. Further, SOC was found to be a predictor of depression [55], loneliness [55], generic and disease-specific health status [55,56], and QoL [55,57,60].
3.3. Psychological care in ACHD
Given the importance of mental health in the overall health status of individuals, and because mental health is a strong – if not the strongest – predictor of QoL of persons with CHD, it is important that psychological care is provided in ACHD [63]. A scientific statement of the American Heart Association gives guidance on how to implement psychological care in ACHD [63]. There is evidence that specialized ACHD care is associated with better morbidity and mortality outcomes [[64], [65], [66]]. However, to the best of our knowledge, there is no evidence yet if and how dedicated ACHD care is impacting on mental health. It is also uncertain that follow-up in specialized ACHD centers are by definition yielding better mental health, because only half of the European ACHD centers have psychologists on staff [67]. To date, APPROACH-IS is the only study that looked at healthcare inputs and patient outcomes [68]. This study found that a higher density of physicians in the country was associated with better mental health [68].
4. Conclusion
As in other chronic medical conditions, mental disorders and mental health issues are prevalent in people with CHD. Traumatic experiences due to invasive procedures and prolonged intensive care treatments, existential questions, but also genetic factors may increase the likelihood of developing mental disorders. Depression, anxiety, bipolar disorder, psychosis, ADHD, and autism spectrum disorders occur more often in people with CHD than in non-afflicted individuals, at rates that are up to 5 times higher (Graphical abstract). Mental health issues change with aging, as initial data show better mental health and less anxiety in older CHD patients. More research in this emerging group of aging patients is needed to be able to provide adequate care tailored to their needs. Psychological interventions should be an indispensable part of ACHD care, because they would not only improve the mental health of afflicted patients, but would enhance patients’ QoL as well.
Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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