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CLINICAL RESEARCH: CONGENITAL HEART DISEASE

Estimates of Life Expectancy by Adolescents and Young Adults With Congenital Heart Disease

Graham J. Reid, PhD^{_*,,,,||,¶,_*}, Gary D. Webb, MD^,||,#, Mor Barzel, MA^_*, Brian W. McCrindle, MD^_**,, M. Jane Irvine, PhD^,||, and Samuel C. Siu, MD^,||,¶

^_* Department of Psychology
Department of Family Medicine, The University of Western Ontario, London, Ontario, Canada
Department of Public Health Science
Department of Medicine, University of Toronto, Toronto, Ontario, Canada
^|| University Health Network, Toronto, Ontario, Canada
^¶ Toronto Congenital Cardiac Centre for Adults, Toronto, Ontario, Canada
^# Philadelphia Adult Congenital Heart Center, University of Pennsylvania, Philadelphia, Pennsylvania
^_** Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada
Hospital for Sick Children, Toronto, Ontario, Canada
Department of Psychology, York University, Toronto, Ontario, Canada

Manuscript received November 22, 2005; revised manuscript received March 21, 2006, accepted March 28, 2006.

^_* Reprint requests and correspondence: Dr. Graham J. Reid, The University of Western Ontario, SSC 7310, London, Ontario N6A 5C2, Canada (Email: greid{at}uwo.ca).

OBJECTIVES: This study sought to determine what adolescents and young adults with moderate to complex congenital heart disease (CHD) believe their life span to be and to examine correlates of their beliefs.

BACKGROUND: Patients with moderate to complex CHD have a shortened life expectancy. Patients' perceptions of their life expectancy have not been examined.

METHODS: Young adults and older adolescents with moderate or complex CHD (n = 296) estimated their own life expectancy and that of healthy peers, and rated their health status and risk of CHD complications. Adults with CHD discussed reasons for life expectancy ratings in an interview.

RESULTS: Patients with CHD expected to live to age 75 ± 11 years, only 4 years less than their healthy peers. Over 85% of patients expected to live longer than our estimates of their life expectancy. Poorer health status and higher perceived risk of CHD complications related to shorter perceived life expectancy. Young adults lacked awareness and understanding of CHD-specific risks, and their life expectancy perceptions often related to risk factors for coronary artery disease.

CONCLUSIONS: Patients with moderate to complex CHD expect to live almost as long as their healthy peers. For most patients, this is unlikely. The implications of these beliefs on health behaviors and life choices are unknown, but should be examined. Nevertheless, patients need accurate information delivered in a sensitive manner to make informed life choices regarding education, careers, and family.

Abbreviations and Acronyms   CHD = congenital heart disease   HSC = Hospital for Sick Children