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Chapter Summary

This chapter discusses different aspects of psychosocial functioning of adults with congenital heart disease (ACHD). Mental health issues, such as depression, anxiety, and posttraumatic stress disorder are common in ACHD (see Fuster and Hurst’s Central Illustration). Intercountry variations have been found, with higher levels in Asia compared to North America or Europe. Patients generally have higher levels of depression, and equal levels of anxiety than people from the general population. Hence, adequate mental health care is pivotal in ACHD. Another important aspect in the counseling of ACHD patients is physical exercise. Exercise capacity is reduced and skeletal muscle function is compromised in patients with congenital heart disease (CHD) compared to healthy individuals. Nonetheless, it is strongly advised that ACHD engage in physical activities, because it yields significant improvements in exercise capacity and psychological functioning. Social areas of concern are employability and insurability, both of which are jeopardized in ACHD. Because CHD is a lifelong disease, young persons with CHD who are transitioning into adulthood are assumed to transfer from pediatric to adultfocused care. Yet, discontinuity of care is prevalent. End-of-life discussions should be part of standard practice in ACHD. Indeed, even when in good health, patients prefer to have discussions about advance care planning and advance directives.

eFig 71-01 Chapter 71: Psychosocial Profiles in Adult Congenital Heart Disease and Transition to Adulthood


Congenital heart disease (CHD) represents a heterogeneous group of simple, moderate, and complex structural heart defects. Globally, it is estimated to occur in 9.3 per 1000 newborns,1 and more than 90% of the children born with CHD now reach adulthood.2,3 Irrespective of the relatively good life expectancy, afflicted patients remain vulnerable for developing medical and psychosocial problems.

Indeed, psychosocial functioning of persons with CHD is an area of concern. Living with CHD and the required invasive treatments may impact on the psychological and social health of afflicted individuals. Psychosocial functioning is an umbrella term encompassing a range of psychological and social issues, as well as their interplay. Psychological factors include depression, anxiety, and posttraumatic stress disorder (PTSD). Social factors include concerns about employability and insurance. Specific topics that are of particular interest for adults with CHD (ACHD) are physical exercise, transition from pediatric to adult care, and end-of-life discussions. The present chapter addresses these aspects in detail.


Mental health issues are common in ACHD. Depression is a serious mood disorder that causes severe symptoms that affect how one feels, thinks, and handles daily activities. In the assessment of depression, it is important to distinguish between the “presence of depressive symptoms” and the diagnosis of “clinical depression.” Numerous studies have been conducted to determine the prevalence of depressive symptoms in ACHD patients. A commonly ...

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