Although many people born with congenital heart defects develop resilience and have a high quality of life, they may face a variety of health-related psychological and social challenges throughout their lives. According to a new scientific statement from the American Heart Association published today in Circulation: quality and cardiovascular results.
Congenital heart defects (CHD) occur when people are born with structural abnormalities of the heart or blood vessels involving the heart. Surgery and catheter procedures are often needed to fix these problems. Most people with coronary artery disease survive into adulthood, with adults now outnumbering children among the more than 2.4 million people with coronary artery disease in the United States. Surgery, however, does not cure coronary heart disease. People may need several operations and specialist heart care is needed throughout their lives, especially if they were born with complex heart problems.
“Decades of research describe the stressors and psychological and social challenges that may present themselves throughout the lifespan of people with coronary artery disease,” said Adrienne H. Kovacs, Ph.D., Editorial Board Chair of scientific reporting and specialized clinical psychologist. working with people with coronary artery disease. “It’s high time we moved beyond awareness to action and provided more resources and expert mental health care for people living with coronary heart disease.”
A scientific statement from the American Heart Association is an expert analysis of current research and may inform future guidelines. The Association’s 2011 science statement on a related topic discussed developmental delays and other neurodevelopmental outcomes in children with coronary artery disease. However, it is the first statement to summarize psychological and social challenges from childhood through adulthood and to review age-appropriate mental health interventions to improve quality of life.
According to the new statement, children with more complex coronary heart disease have a 5 times higher rate of being diagnosed with anxiety in their lifetime compared to children without coronary heart disease. Despite evidence of emotional, social and behavioral difficulties, only a small fraction of children with coronary artery disease are offered or participate in mental health assessment or treatment. For adults with coronary artery disease, the lifetime rate of experiencing a mood or anxiety disorder is about 50%, compared to about 30% for adults in the general population.
The statement summarizes the psychosocial impact of coronary heart disease across the different stages of life:
- Childhood — Babies can be exposed to frightening or painful procedures, and they can be separated from caregivers and family for long periods of time for surgery or other hospitalization. In response, infants with coronary artery disease may be hypersensitive to light and sound, have difficulty feeding and sleeping, or display intense fear and distress, and they may have developmental delays.
- Childhood — There may be additional hospitalizations and surgeries, so fewer opportunities to play or go to school, and they may also have developmental delays. In response, children with coronary artery disease may become socially withdrawn, experience symptoms of anxiety or depression, have difficulty in school, or display aggression or hyperactivity.
- Adolescence — Health issues can arise just as adolescents struggle for independence, expand their social networks, and take on more responsibility for managing their health care as they transition from pediatric to adult care. In response, adolescents with CAD may have social difficulties, become angry, defiant or frustrated, or have body image issues. They may also display risky behaviors or fail to follow health recommendations.
- Adulthood — There may be new or worsening cardiac symptoms, repeat surgeries or other cardiac procedures in adulthood, and coronary artery disease may negatively impact finances, employment, insurance and options of family planning. In response, adults with coronary artery disease may struggle with relationships, college, or employment. They may also struggle to meet their health needs and worry about death and agony.
“It’s completely understandable to have a psychological reaction to living with a congenital heart defect. The condition presents many lifelong challenges and can include unexpected news – like a person realizing they can no longer physically managing the demands of her job, or learning that there are significant risks to pregnancy,” Kovacs said. “Many people with coronary artery disease have tremendous resilience in the face of these challenges. At the same time, we want to normalize the psychological responses and increase the prevalence of psychological wellness care to help people with coronary artery disease live full and healthy lives.
According to the statement, approaches to mental health care can encompass self-care strategies, such as relaxation techniques and in-hospital or online support groups; psychotherapy such as talking therapies for individuals, couples, families or groups; and drug therapy where a medical team can determine appropriate and heart-safe medications for depression or anxiety.
The statement strongly advocates the integration of mental health professionals within specialist CHD care teams. Integrated mental health care normalizes emotional responses to health issues, reduces stigma, improves timely access when health issues arise, and provides coordinated care within the multidisciplinary health care team.
“The purpose of this statement is to foster psychologically informed care that empowers people with coronary artery disease and their families and provides emotional support,” Kovacs said. “We would like mental health assessment and support to be part of comprehensive care for all people with coronary artery disease rather than a special service that is only offered in certain locations or in specific circumstances.”
In addition, the statement highlights priority research areas to better understand and improve the psychological outcomes of people with coronary artery disease, including:
- how best to identify significant psychological distress;
- factors that can contribute to psychological resilience and well-being;
- get more information about the safety and effectiveness of psychotropic drugs at different ages; and
- personalized approaches to mental health interventions.
This statement follows two other scientific statements from the Association relating to the care of people with coronary artery disease: a March 2022 scientific statement on supporting the transition from pediatric to adult health care; and an April 2022 scientific statement addressing the impact of social determinants of health on coronary care across the lifespan.
This scientific statement was prepared by the volunteer writing group on behalf of the American Heart Association’s Council on Congenital Heart Disease and Heart Health in Young People (Young Hearts) and the Stroke Council. The writing group included a diverse and interdisciplinary group of experts with a long history of psychological care for people with coronary artery disease, including two authors with coronary artery disease.
Scientific statements from the American Heart Association promote greater awareness of cardiovascular disease and stroke and help facilitate informed healthcare decisions. Scientific statements describe what is currently known about a subject and areas that require further research. Although scientific statements inform the development of guidelines, they do not make treatment recommendations. The American Heart Association guidelines provide the Association’s official clinical practice recommendations.
Co-authors are Vice President Lazaros K. Kochilas, MD, MS, FAHA; Judith Brouillette, MD, Ph.D.; Patricia Ibeziako, MD; Jamie L. Jackson, Ph.D.; Nadine A. Kasparian, Ph.D.; Yuli Y. Kim, MD; Tracy Livecchi, LCSW; and Christina Sillman, MSN Author disclosures are listed in the manuscript.