Biopsychosocial experiences of adults with congenital heart disease: Review of the literature

doi:10.1016/j.ahj.2004.08.025

American Heart Journal

Volume 150, Issue 2, August 2005, Pages 193-201

https://doi.org/10.1016/j.ahj.2004.08.025 Get rights and content

Background

Approximately 1% of all newborns display some form of congenital heart disease (CHD). Successful medical and surgical management of CHD has allowed 85% of these children to survive into adulthood and produced a new set of challenges for both patients and doctors with an emphasis on quality of life and psychosocial functioning.

Methods

The current paper has 3 aims: (1) to summarize the research literature examining the emotional adjustment among this population, (2) to detail the psychological, social, and quality-of-life factors that might result in an increased risk of psychological maladjustment, and (3) to provide clinical management strategies to optimize health outcomes.

Results

Current empirical evidence has suggested that compared with same aged reference norms in US studies, adults with CHD had scores indicative of worse emotional functioning as assessed by both clinical interviews and self-report measures. Similar European studies have generally not demonstrated such differences. Additional research suggests that areas of functioning that may be particularly affected include neurocognitive functioning, body image, social and peer relationships, and mild delays in developmental functioning.

Conclusions

These studies suggest that patients with CHD are successfully engaging in full adult responsibilities and roles but do experience specific psychosocial challenges that may impact emotional functioning, self-perception, and peer relationships. Lifestyle considerations in young adulthood are significant and impinge on pregnancy considerations and exercise capabilities. Clinical management strategies include increased awareness and dialogue between patients with CHD and physicians regarding psychosocial concerns.

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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Curriculum in CardiologyBiopsychosocial experiences of adults with congenital heart disease: Review of the literature

Background

Methods

Results

Conclusions

Section snippets

Brief review of congenital heart defects

Emotional adjustment of adults with CHD

Neurocognitive deficits

Delayed progression into full adulthood

Health-related QOL

Clinical strategies for maximizing psychosocial care

Conclusions

Psychosocial functioning of adults with congenital heart disease: a neglected area

Eur Heart J

Congenital heart disease in adults: a new cardiovascular subspecialty

Circulation

Adult congenital heart disease

Curr Opin Cardiol

Care of the adult with congenital heart disease

J Am Coll Cardiol

Canadian consensus conference on adult congenital heart disease 1996

Can J Cardiol

Grown-up congenital heart

Heart

Congenital heart disease in adults. First of two parts

N Engl J Med

Congenital heart disease in adults. Second of two parts

N Engl J Med

Temporal variability in birth prevalence of cardiovascular malformations

Heart

Right and left ventricular systolic function late after repair of tetralogy of Fallot

Am J Cardiol

Long-term outcome in congenitally corrected transposition of the great arteries: a multiinstitutional study

J Am Coll Cardiol

Psychosocial functioning of young adults after surgical correction for congenital heart disease in childhood: a follow up study

J Psychosom Res

Psychosocial functioning of the adult with congenital heart disease: a 20-33 years follow up

Eur Heart J

Psychopathology in young adults with congenital heart disease: follow up results

Eur Heart J

A cross-sectional study of the prevalence of psychopathology in adults with congenital heart disease

J Psychosom Res

Are cyanosed adults with congenital cardiac malformations depressed?

Cardiol Young

Long-term psychologic implications of congenital heart disease: a 25-year follow-up

Mayo Clin Proc

Psychosocial profile of adults with complex congenital heart disease

Mayo Clin Proc

Depression and anxiety in adults with congenital heart disease: a pilot study

Heart Lung

Examining the psychological consequences of surviving childhood cancer: systematic review as a research method in pediatric psychology

J Pediatr Psychol

Primary care and health. A cross-national comparison

JAMA

The Dutch health care system: lessons for reform in the United States

South Med J

Universality, inclusion, and continuity: implications for pediatrics

Pediatrics

Academic outcomes in children with congenital heart disease

Clin Pediatr

diagnostic and statistical manual of mental disorders

Adolescents with congenital heart disease: psychopathological implications

Adolescence

Curriculum in Cardiology
Biopsychosocial experiences of adults with congenital heart disease: Review of the literature