AHA: ‘Start early’ to optimize care transition for teens with congenital heart disease
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Cardiologists must emphasize the benefits of lifelong care early for adolescents and emerging adults with congenital heart disease, working with families to provide support based on individual needs, according to a new scientific statement.
Adolescents and emerging adults are estimated to make up 15% to 20% of the population with congenital heart disease, yet there remain significant challenges to implementing a successful transition from pediatric to adult care, according to the American Heart Association. Fewer than 30% of the estimated 1.4 million adults with congenital heart disease living in the United States are currently in subspecialty care, according to the AHA scientific statement. Additionally, lapses in care during the transition period have been associated with increased ED use, highlighting the need for better planning for a successful transition.
“We are lucky in that treatments have evolved so that patients with congenital heart disease are doing well,” Anitha S. John, MD, PhD, FAHA, associate professor of pediatrics at George Washington University and medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital in Washington, D.C., and chair of the writing group for the statement, told Healio. “Many times, in adolescence, even if patients are living with complex forms of congenital heart disease, they feel well. Going to the doctor may not be foremost in your mind. It is an added reason to start the [transition] process early.”
The guidance is an update to the AHA’s 2011 scientific statement and details the latest suggested best practices for managing the health care transition to adulthood for adolescents with congenital heart disease.
Assess social determinants of health
The updated guidance calls on cardiologists to assess adolescent patient needs as they relate to the social determinants of health, including factors such as housing, transportation, food insecurity and neighborhood environment.
“It is not surprising, then, that several studies have shown that social determinants of health, particularly lower socioeconomic status, contribute to absences in cardiac visits and lapses in care,” the researchers wrote. “A recent meta-analysis points out that one of the most important interventions for patients with congenital heart disease would be routinely screening for social determinants of health, with referrals to appropriate services for those who screen positive.”
John said each health system has different resources; providers must have flexibility and ask what they can do to meet the needs of patients.
“Care is not one-size-fits-all,” John said in an interview. “This updated statement also highlights additional factors, such as care for special populations. As programs are being designed, refined and built upon, we cannot forget patients who are vulnerable and at-risk.”
John said cardiologists must keep in mind the patient population they serve.
“You may have folks who do not have easy transportation or live far away,” John said. “You may have patients moving to more rural areas or those who, once aging out of their parents’ health insurance, they will not be readily insured anymore. Those patients need preparations to have something in place.”
‘Learning to live’ with congenital heart disease
The guidance includes seven key principles for a congenital heart disease-specific health care transition program. These include emphasizing patient self-management and encouraging shared decision-making; guiding patients to build medical knowledge, providing psychosocial support, emphasizing lifelong care, advocating for health equity and providing transition education and skills to all patients with congenital heart disease, particularly those with neurocognitive differences.
Cardiologists should also address mental health during visits and understand the role psychosocial development plays in the transition process, John said.
“It is important to address psychological health for not just the patient, but the family,” John said. “We want to emphasize that keeping up with your care will help with that as you get older. We want to underscore the importance of learning to live with your congenital heart disease. I often tell patients, ‘We are here to help you do the things you want to do with your life.’ It is not that we are here to impose restrictions. Sometimes there are limitations, but the purpose of seeing the doctor is so you can do the things you want to do. This is part of you living a vital and healthy life.”
For more information:
Anitha S. John, MD, PhD, can be reached at anjohn@childrensnational.org.
Perspective
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Emily Ruckdeschel, MD
John and colleagues have done an amazing job providing a concise review of the complex and very important topic of transition. This scientific statement highlights the often-overlooked importance of social determinants of health and psychosocial well-being in successful transition.
Failure to transition has broad implications including increased health care utilization, worse health care outcomes and decreased quality of life. The paper provides advice for the development of a transition program, including educational topics and thoughts on billing. This practical approach to a complex and important topic is refreshing and necessary. Transitioning from pediatric- to adult-oriented care can be a challenging time in the life of patients and families with congenital heart disease. This paper adds needed recommendations and guidance to help ensure pediatric patients with congenital heart disease will thrive as adults.
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