AHA: More mental health support needed in pediatric, adult congenital heart disease
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The psychological needs of people with congenital heart disease remain largely unmet despite research suggesting mental health support is critical for quality of life, according to an American Heart Association scientific statement.
Although people with congenital heart disease face an elevated prevalence of clinically significant psychological distress, mental health treatment for them is uncommon, Adrienne H. Kovacs, PhD, former professor in the department of medicine at Oregon Health & Science University, founder of Equilibria Psychological Health and chair of the AHA writing group for the new scientific statement, told Healio. In the statement, the authors wrote that the onus on accessing psychological care should not be placed solely on the shoulders of patients and families.
“We have known about psychological challenges faced by people with congenital heart disease for decades,” Kovacs, also a past president of the International Society for Adult Congenital Heart Disease, said in an interview. “We as a writing group agreed that it is time to move from awareness to implementation of strategies to manage psychological distress and foster resilience in clinical care settings, ideally through the integration of a mental health professionals.”
Children with more complex congenital heart disease have a five times higher rate of receiving an anxiety diagnosis in their lifetime compared with children without congenital heart disease, Kovacs said. For adults with congenital heart disease, the rate of experiencing a mood or anxiety disorder in their lifetime is about 50%, compared with about 30% for adults in the general population.
The scientific statement was published in Circulation: Cardiovascular Quality and Outcomes.
Lifelong psychological impact
The statement summarizes the psychosocial impact of congenital heart disease across the life span:
Infancy — Infants may be exposed to frightening or painful procedures and may be separated from caregivers and family for extended periods of time for surgery or other hospitalization. In response, infants with congenital heart disease may be hypersensitive to light and sound, have difficulty feeding and sleeping or display intense fear and distress.
Childhood — There may be additional hospitalizations and surgeries, therefore, less opportunity to play or attend school, and they may also have developmental delays. Children with congenital heart disease may become socially withdrawn, experience symptoms of anxiety or depression, have difficulty in school or display aggression or hyperactivity.
Adolescence — Adolescents with congenital heart disease face the typical challenges of this developmental stage and additional disease-related stressors, according to the researchers. Health concerns may arise as teens are striving for independence, expanding their social networks and taking on more responsibility for their health care as they transition from pediatric to adult care. In response, adolescents with congenital heart disease may have social difficulties, become angry, defiant or frustrated, or have body image concerns. “Psychological distress has been linked to poorer treatment adherence among adolescents with other chronic illnesses and this association presumably also exists in congenital heart disease,” the researchers wrote. “Thus, at a time when medical teams typically transition responsibility for disease management from parents to adolescents, individuals with congenital heart disease are also especially vulnerable to psychological distress.”
Adulthood — For adults with congenital heart disease, heightened vulnerability to emotional distress and elevated rates of mental health diagnoses persists. In response, adults with congenital heart disease may have difficulty with interpersonal relationships, higher education or employment. They may also have trouble managing their health needs and become focused on death and dying.
‘Multiple opportunities’ to intervene
Kovacs said people living with congenital heart disease are often resilient and develop effective coping strategies, despite facing multiple health stressors across their lives. Additionally, there are “multiple opportunities” to intervene to provide appropriate psychological care.
Approaches to mental health care may include self-care strategies, such as relaxation techniques and hospital-based or online support groups, as well as psychotherapy and medication therapy when appropriate.
“Let’s take what we have learned about groups of people living with congenital heart disease from collective research and figure out how to apply this knowledge at the patient level,” Kovacs told Healio. “For congenital heart disease clinicians, one of our hopes was to create a succinct document that they could take to their leadership and say, ‘This is why it is important to provide psychological care, and here is how we can do it.’”
Awareness of the psychological sequalae is also necessary for every clinician who happens to take care of people with congenital heart disease, Kovacs said.
“That includes those who specialize in HF, electrophysiology, surgery, catheterization, coronary artery disease,” Kovacs said. “This is not an isolated concern, particularly as our patients are living longer and may develop acquired heart disease.”
The scientific statement was prepared by a writing group on behalf of the AHA Council on Lifelong Congenital Heart Disease and Heart Health in the Young (Young Hearts) and the Stroke Council. The writing group consists of experts in pediatric and adult congenital heart disease, pediatric and adult psychiatry and psychology, as well as experts in nursing and social work and two patient voices.
“It is our responsibility to make sure the people whose lives we saved as infants also have the best quality of life, and live rich and full lives through adulthood,” Kovacs said.
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