This study systematically tested the effects of different demographic, clinical and psychosocial variables in psychosocial adjustment and psychiatric morbidity. In a growing population of adults with CHD, this information is rather important in unveiling strategies that can be used to assist and care for patients, leading to better emotional adjustment and better outcomes in different life challenges.
The assessment instruments used for psychosocial adjustment enabled us to compare subgroups of patients, regarding demographic, clinical and psychosocial variables. One main finding of our study was that females with CHD reported higher levels of somatic complaints, anxiety/depression, thought problems, attention problems, aggressive behaviour, internalisation and externalisation, than males, thus showing a worse psychosocial adjustment. Conversely, relatives find male patients more withdrawn than girls.
In our study, female patients had almost double of lifetime prevalence of psychopathology than males. These findings on psychiatric morbidity and on different scales of psychosocial adjustment are consistent with other studies on the general population that report differences between genders, with females showing higher rates of emotional problems. Studies show also that females have greater likelihood of displaying higher levels of anxiety/depression and somatic complaints when facing negative obstacles that interfere with the interpersonal level, resulting in higher levels of internalisation.6
This may be due to the presence of a scar, situated on the chest, being a source of uncertainties or discomfort. In addition to affecting sexual relationships, CHD can also interfere with pregnancy and delivery, leading to a sense of anxiety about their physical condition.6
Some studies show that females are more likely to develop depressive symptoms when facing negative life events than males.6
In this study, adolescents or young adults with severe type of CHD reported having higher levels of social problems and, thus, worse psychosocial adjustment, compared with those with moderate or mild form of CHD.
These results may be related to the fact that they need further medical care throughout their life, while patients with mild or moderate CHD may have a daily life similar to healthy adolescents and young adults.8
Patients with severe forms of CHD show higher level of internalisation and somatic complaints and that may be associated with the fact that these patients are more vigilant about their health, being more anxious about any complications. This may explain the results, since anxiety is a component of internalisation scale.15
The type of CHD did not show any impact with statistical relevance in patients’ self-report measures of psychosocial adjustment. However, the caregivers’ standpoint seems to be more sensitive regarding this feature, as they perceive the cyanotic patients as having more attention problems and worse psychosocial adjustment.
Other published studies also showed that cyanosis is not a stable indicator that patients will have behavioural and emotional problems.8
Patients who underwent surgical procedures revealed higher levels of withdrawn behaviour. This may be related with the fact that admissions as well as recovery are long, thus providing a prolonged absence from education and from contact with peer groups, which could lead to difficulties of reintegration and therefore to isolation of patients.5
Patients with worse social support had higher levels of withdrawn behaviour and social problems, and thus, a worse psychosocial adjustment. The assessment of the caregivers also reported higher levels of withdrawn behaviour and internalisation in patients with poor social support, showing worse psychosocial adjustment.
According to several studies, parents and siblings of adolescents or young adults with CHD are more prone to face a different number of psychosocial stresses putting the whole family in need of psychosocial support. Many studies reveal a higher need for intervention on family problems in families with children with chronic medical diseases. When the complexity of the disease is low, parents seem to be more fitted to provide support.18
These families are reported to experience more stress, that can have an impact on the child's adjustment.16
Parents of children with CHD can be overprotective and hypervigilant about their child's health, making it hard for their children to be more independent. Many studies show that these patients are more unlikely to have ‘independent lifestyles’ than healthy adolescents or young adults.7
Participation in leisure time activities can be a contributor to a better social outcome.14
Limited physical competence translated into more withdrawn, feeling more isolated, when compared with patients with satisfactory physical competence. Self-report showed that patients with physical limitations have worse psychosocial adjustment. A low exercise capacity can be translated into more internalising problems. For older heart patients, limited physical competence led to concerns and anxiety about their health.
According to some authors, patients submitted to physical training intervention showed a decrease in internalising problems.8
Physical limitations and school absences prevent full participation in different activities, leading to isolation and social awkwardness. This can be translated into restricted employment opportunities.7
In our study, an unsatisfactory academic performance led to worse psychosocial adjustment, as patients report having higher levels of anxiety/depression, attention problems and externalisation than those with good academic performance. Several previous published studies show that CHD has an impact on school careers, for many hospitalisations and restrictions, being the main reason for the attendance of special education by these patients. When compared with healthy adolescents or young adults, the CHD patients are more unlikely to complete a lower educational level.14
Sometimes, children with CHD have neurodevelopment deficits. These often will not show until school age, when the academic demands start having an impact on their lives. Many families rationalise their child's developmental delay to the disease and several hospitalisations.19
Some studies show that an unsatisfactory educational background can be translated into lower educational and occupational achievement.7
This study showed a 21.8% prevalence of psychiatric disorder in our patients. Females showed a higher percentage of psychiatric disorder with 31%, and males only had 14%.
When compared with the reference value of the WHO, 10% of the world population, it seems that adolescents and young adults with CHD have an increased proneness for psychiatric diagnosis.20
However, a study of six different European countries showed a prevalence of 25% in the general population, which is closer but higher than the results for CHD patients in our study ().21
Another study estimated that the lifetime prevalence of psychopathology is 19.4% in Spain, 18.1% in Italy (countries that can be considered culturally close to Portugal), and 25.2% in Germany, but in striking contrast, 37.9% in France and 47.4% in the USA.22
Comparing the prevalence of psychiatric disorders in our participants with data from studies in other countries