Mental Health Across the Lifespan in Congenital Heart Disease: Unmet Needs and a Call to Action

As recently as the 1970s, only 20% of infants born with congenital heart disease (CHD) – the most common birth defect in children – survived to adulthood. Today the figure is over 90%, thanks to advances in surgery and transcatheter procedures, postoperative care, and medical management. However, such notable successes in medical care of individuals with CHD have been accompanied by challenges in social, emotional, and behavioral well-being, particularly in those with the most complex forms of congenital heart disease.

Disorders of mental health, including anxiety, depression and post-traumatic stress disorder, can affect educational achievements, employability, insurability, and quality of life. Despite the alarmingly high prevalence of psychological distress in the CHD population, mental health therapies, such as psychotherapy or psychotropic medications, are not routinely offered. Access to care has been hindered by a paucity of mental health professionals in many regions of the country, stigma of mental health disorders, and inadequate insurance coverage. In addition to gaps in care, high-quality research to evaluate the efficacy and safety of therapeutic strategies is virtually absent. Lastly, few educational materials on psychological care of individuals with CHD, including mental health interventions, are available to individuals with CHD and their families. A new AHA statement, Psychological Outcomes and Interventions for Individuals with Congenital Heart Disease, provides recommendations for integration of psychological care into medical clinics and for age-appropriate interventions to improve psychological outcomes in CHD across the lifespan.

The AHA statement begins with a state-of-the-art review of psychological outcomes and their risk factors in patients with CHD from infancy through adulthood. Psychological difficulties among children and adults affected by CHD may be related to a number of different risk factors. Family stress begins in the prenatal period, as parents worry about their child’s upcoming medical challenges, and also contemplate practical concerns such as financial hardship from medical bills. After birth, individuals with CHD are exposed to risk factors that vary according to age. Infants with CHD often have repeated hospitalizations, catheterizations, and operations. They may be exposed to bright light, noise, disrupted sleep, and diminished physical/emotional contact with family members. Children with CHD are more likely than the general population to have anxiety and disruptive disorders like attention deficit and hyperactivity disorder (ADHD), and their well-documented neurodevelopmental impairments affecting school performance can negatively impact self-esteem. Challenges to psychosocial well-being in adulthood include transition to social, medical, and financial independence; stressors related to worsening cardiac status or interventions; loneliness; and higher risks of childbearing. Indeed, mental health diagnoses, including mood and anxiety disorders, affect about half of adults with complex CHD.

To address interventions to mitigate psychological distress, the AHA statement champions the integration of psychologists or other mental health professionals within CHD teams as a vital component of comprehensive care. This approach not only reminds caregivers of the importance of psychosocial factors as they formulate treatment plans, but may improve their comfort in bringing up psychological well-being during medical visits. The incorporation of a mental health professional into CHD clinics also provides better access to care for all patients, without regard to race, ethnicity, or socioeconomic status.

The statement also provides a review of mental health interventions. There are too few studies to generate a high level of evidence regarding efficacy of psychological interventions in individuals with CHD. Therefore, the statement reviews the general literature from which therapies for CHD can be derived. In pediatric-onset chronic diseases, psychotherapy is associated with lower rates of procedure-related anxiety, improved knowledge of disease, more appropriate healthcare utilization, and better psychological outcomes. In adults with coronary disease, psychological interventions have been linked to less depression, anxiety, and stress, and to lower mortality from cardiovascular causes. CHD programs can facilitate access to individual psychotherapy therapy, family or group psychotherapy, peer support groups, and summer camps for those with CHD to boost psychological wellbeing and empowerment. There is a critical need for high-quality clinical trials to test the impact of psychotherapy specifically in individuals with CHD, who may have unique aspects of brain development and microstructure, as well as cardiac physiology.

Data on pharmacotherapy in children and adults with CHD are largely limited to descriptions of the prevalence of medication use. In childhood, ADHD is the most common psychological diagnosis, and childhood ADHD is associated with worse well-being in adolescence. Medications such as stimulant drugs for ADHD appear to be safe under most circumstances; because central nervous system origins of ADHD in children with CHD are likely different from those in the general population, randomized trials in children with CHD are needed to test the efficacy of pharmacologic intervention. Even fewer data are available on the use of psychotropic medications. The statement tabulates psychotropic drugs and considerations for their use to be considered on an individual basis. Finally, the statement emphasizes that medical and psychological health are a two-way street, and that both must be addressed to optimize well-being.

Despite dramatic advances in medical care, critical care gaps in the identification and treatment of psychological disorders undermine the ability of individuals with CHD to achieve their full potential for health and fulfillment. The AHA statement is a call to action for cardiologists and medical caregivers, mental health professionals, and the community of individuals with CHD and their families to prioritize and advance mental health care through better care, research, and advocacy.