Curriculum in CardiologyBiopsychosocial experiences of adults with congenital heart disease: Review of the literature
Section snippets
Brief review of congenital heart defects
We provide a brief overview of congenital cardiac defects that have been thoroughly described elsewhere in the literature.7, 8 Diagnosed congenital cardiac defects vary in severity, natural history, and long-term management and have been classified as minor (18%), significant (54%), or complex (28%).9
Emotional adjustment of adults with CHD
Research examining the psychological functioning of adults with CHD has typically contrasted their functioning to a healthy comparison group or interpreted it in terms of psychiatric diagnostic criteria. These studies generally ask the question, “Are adults with CHD more likely to have psychological difficulties than their peers?” A review of studies in Table I reveals equivocal results because of somewhat conflicting data. Three studies of Dutch adults indicated that these individuals had
Neurocognitive deficits
Neurocognitive deficits refer to difficulties in processing sensory input and motor output and include problems in language, memory, attention, and planning. For a thorough literature review of the intellectual and academic deficits associated with CHD, readers are referred to Griffin et al.24 Infants and children with unoperated CHD are reported to have a high incidence of neurodevelopmental abnormalities for a number of reasons including cyanosis and chromosomal and genetic syndromes.
Delayed progression into full adulthood
The report from the American College of Cardiology's 32nd Bethesda Conference reviews several domains of life span developmental tasks and issues for adolescents and young adults with CHD.4 Adjustment to adolescence and adulthood is associated with increasing independence, yet this transition is more difficult among patients with a history of greater reliance on their parents. Interview data indicate that perceptions of parental overprotection during childhood are not uncommon.17, 27 Parents of
Health-related QOL
Health-related QOL is a multidimensional construct that includes physical functioning, disease-related and treatment-related symptoms, health perceptions, and psychological, occupational, and social functioning.38 Therefore, health-related QOL reflects the impact of physical illness and treatment on overall patient well-being. Table II provides a summary of the studies examining health-related QOL among adults with CHD using psychometrically valid instruments. Compared with the general
Clinical strategies for maximizing psychosocial care
The available literature highlights the issues for adults with CHD across psychological, social, and QOL domains. Previous successes in surgery and cardiac care have led to the need for improved psychosocial care of patients with CHD. The goal is to achieve optimal patient outcomes via helping patients with CHD to successfully overcome the psychological and behavioral limitations that can be prompted by the experience of CHD. Below we describe a prescriptive set of clinical strategies.
Conclusions
Approximately 1% of all newborns display some form of CHD, and 85% of these children survive into adulthood. Successful surgical and clinical management has produced a new set of psychosocial and QOL challenges for both patients. Current empirical evidence has suggested that American adults with CHD may have worse emotional functioning than patients without CHD. However, similar European studies have generally not demonstrated emotional differences. Additional research suggests that
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