Survivors of Congenital Heart Disease Report Poor Risk Knowledge and High-Fat Diets

Survivors of Congenital Heart Disease Report Poor Risk Knowledge and High-Fat Diets 150 150 Tiasha Letostak, PhD

A new study suggests that CHD survivors may lack knowledge about their disease and would benefit from education about future risks and health behaviors.

Over 1 million adults with congenital heart disease (CHD) currently reside in the United States. These individuals are at heightened risk for numerous health concerns, including endocarditis, pregnancy complications and life-threatening cardiac-related complications. In a recent study published in Heart & Lung, researchers at Nationwide Children’s Hospital found that CHD survivors, regardless of age, have poor diets and poor knowledge about future cardiac-related complications, suggesting that these individuals may benefit from health education emphasizing future health risks and positive health behaviors, from both their pediatric and adult health care providers.

Due to medical advancements, the life expectancy for individuals with CHD has increased. As survivors of CHD transition from adolescence to adulthood, researchshows that they often lack knowledge about their condition to help them assume responsibility for their health care. This includes difficulty recalling the name of their diagnosis and trouble understanding important general medical management issues, such as endocarditis prevention and the avoidance of smoking and alcohol.

“Despite documented gaps in knowledge, the relationship between disease knowledge and health behaviors had previously not been investigated among survivors of CHD,” says Jamie L. Jackson, PhD, principal investigator in the Center for Biobehavioral Health in The Research Institute and The Heart Center at Nationwide Children’s and lead author of the recent publication. “Engaging in positive health behaviors, such as eating a diet low in saturated fat and being physically active, may help prevent or slow the development of cardiac-related complications like coronary heart disease and hypertension.”

Because health behaviors among individuals with CHD were understudied, Dr. Jackson and other researchers at Nationwide Children’s aimed to compare levels of personal and general CHD disease knowledge among adolescents and adults with CHD and their level of engagement in positive health behaviors. Additionally, they sought to explore the relationship between various aspects of disease knowledge, perceived risk and health behaviors among age groups.

“We developed a 24-item measure, the CHD Assessment of Information Measure (CHD-AIM), for this study,” explains Kathryn Vannatta, PhD, principal investigator in the Center for Biobehavioral Health at Nationwide Children’s. “The goal was to expand upon available CHD disease knowledge measures. It is the understanding of future complications that likely contributes to whether or not an individual will engage in certain health behaviors, like eating a low-fat diet.”

The CHD-AIM measured three aspects of disease knowledge. Perceived risk was assessed by totaling the number of cardiac conditions for which participants believed they were at risk due to their CHD, regardless of accuracy. Health behaviors, which included saturated fat intake and physical activity, were measured by two self-report measures. Medical chart information such as age, diagnosis, CHD lesion severity, surgical history and current medications were also recorded.

Results demonstrated that greater risk knowledge was associated with lower fat intake, regardless of age and level of education. Furthermore, those participants who exercised more expected fewer future complications.

“Our results reinforce the need for pediatric and adult health care providers to emphasize age-appropriate disease knowledge and participation in good health behaviors,” says Curt J. Daniels, MD, director of the Adolescent and Adult Congenital Heart Disease Program at The Heart Center and a board-certified physician in cardiology, internal medicine and pediatrics at Nationwide Children’s. “If patients are aware of the complications for which they are at risk, and if they know how to potentially mitigate these through better health behaviors, then we can optimize care for CHD survivors transitioning from adolescence to adulthood.”

According to researchers, future studies on this population should include objective measurements of health behaviors, in addition to self-report assessments, to more accurately characterize the level of engagement in physical activity and other positive behaviors. A longitudinal design could also track changes in disease knowledge and health behaviors over time, the team says, spanning multiple important developmental stages, to identify the direction of the relationship between disease knowledge and health behaviors.

To help accomplish this research, Dr. Jackson and other hospitals around the world are participating in Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Diseases – International Study, or APPROACH-IS,  a study to examine behavioral and quality-of-life issues of adults with CHD. Nationwide Children’s and The Children’s Hospital of Philadelphia are the only two U.S. children’s hospitals participating. As coordinator of the study for Nationwide Children’s, Dr. Jackson has already enrolled 100 patients for APPROACH-IS and aims to enroll another 100 by 2015.



  1. Jackson JL, Tierney K, Daniels CJ, Vannatta K. Disease knowledge, perceived risk, and health behavior engagement among adolescents and adults with congenital heart disease.Heart Lung. 2014 Sep 29.
  2. Van Deyk K, Pelgrims E, Troost E, Goossens E, Budts W, Gewillig M, Moons P. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused careAm J Cardiol. 2010 Dec 15, 106(12):1803-7.

About the author

Tiasha is the senior strategist for Clinical & Research Communications at Nationwide Children's Hospital. She provides assistance to investigators in The Research Institute and clinician-scientists at Nationwide Children’s for internal and external communication of clinical studies, peer-reviewed journal articles, grant awards and research news. She is also the editor-in-chief for Research Now, Nationwide Children's monthly, all-employee e-newsletter for research, as well as a writer for Pediatrics Nationwide.