Understanding Stress Experienced by Survivors of Congenital Heart Disease

Understanding Stress Experienced by Survivors of Congenital Heart Disease 150 150 Tiasha Letostak, PhD

For adolescent and adult survivors of congenital heart disease, how they perceive disease-related stress has a key connection to how they report health outcomes, such as quality of life and emotional well-being.

Researchers at Nationwide Children’s Hospital are the first to systematically identify different types of disease-related stress experienced by survivors of congenital heart disease, based on their age and disease severity. A new study examines how perceptions of these stressors uniquely contribute to health outcomes that patients report.

Congenital heart disease (CHD) is the most common birth defect, diagnosed in nearly 1 percent of all births in the United States. Advances in medical and surgical care have led to significant improvements in survival, and there are now more than 1 million American adults living with CHD. More adolescents and young adults with CHD are transitioning to independently manage their own health care, but research on stressors inherent to living with CHD is limited, even though stress has been shown to have a significant impact on health outcomes.

“There is conflicting research evidence on emotional health among adolescents and young adults with congenital heart disease, possibly due to the variability in types of CHD and how the condition impacts daily life,” says Jamie L. Jackson, PhD, principal investigator in the Center for Biobehavioral Health in The Research Institute at Nationwide Children’s and lead author of the study. “However, no study to date had quantified the potential sources of stress encountered by CHD survivors nor examined those stressors across pertinent age groups that are in the process of assuming more responsibility for their healthcare as they enter adulthood.”

Two experiences emerged as being stressful for almost half of the study participants, and these included concerns about future health and having scars or other signs of medical procedures. Adolescents (15-17 years old) reported less perceived stress than emerging (18-25 years old) or young (26-39 years old) adults.

The study team from Nationwide Children’s, which also included Curt J. Daniels, MD, director of the Adolescent and Adult Congenital Heart Disease Program at The Heart Center, and Kathryn Vannatta, PhD, principal investigator in the Center for Biobehavioral Health, as co-authors, was motivated to conduct this research to better quantify these sources of stress and examine their relationship to important patient-reported outcomes.

“This study was conducted across both pediatric and adult CHD clinics at Nationwide Children’s and The Ohio State University, respectively, and the recruitment rate was very good at 95%,” explains Dr. Jackson, who is also a principal investigator in The Heart Center at Nationwide Children’s. “We intentionally recruited participants in three age groups to better represent adolescents between 15-17 years of age, emerging adults between 18-25 years of age, and young adults between 26-39 years of age, to examine the possible developmental differences in their experiences of stress.”

In total, researchers recruited 173 adolescents and emerging and young adults. Participants rated the degree to which they found various aspects of CHD stressful and reported outcomes of health-related quality of life and emotional distress.

“This study highlights that concerns about having CHD vary across age groups,” says Dr. Jackson of the results. “Therefore, clinicians should be aware that what may not be an issue during adolescence may become a significant source of distress for that patient in adulthood.”

Additionally, the study results showed that survivors with mild functional limitations or impairments also reported higher perceived stress than those without any symptoms.

“CHD survivors who have even mild symptoms that limit their physical functioning have increased perceptions of stress that may significantly reduce their quality of life and cause emotional distress,” continues Dr. Jackson. “Patients who have physical limitations can be identified early and referred for cognitive behavioral therapy or stress management.”

The team is currently concluding a 3-year follow-up study on the participants who provided information for this recent research, which was published in the Journal of Cardiovascular Nursing in late September.

“Our next step is to  to look at changes in stressors and physical symptoms over time and how that may be associated with changes in quality of life and emotional health,” says Dr. Jackson.


Jackson JL, Gerardo GM, Daniels CJ, Vannatta K. Perceptions of Disease-Related Stress: A Key to Better Understanding Patient-Reported Outcomes Among Survivors of Congenital Heart DiseaseJournal of Cardiovascular Nursing. 2016 Sep 28 [Epub ahead of print].


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.