Landmark Guidelines Offer New Hope for Adults with Congenital Heart Disease
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New recommendations from the American Collage of Cardiology (ACC) and american Heart Association (AHA) aim to improve care and outcomes for the growing population of adults living with congenital heart disease (ACHD).
the landscape of care for adults born with heart defects has dramatically shifted with the release of updated clinical guidelines from the ACC and AHA, developed in collaboration with leading medical societies. Thes guidelines, replacing previous recommendations from 2018, provide a thorough framework for monitoring, counseling, and treating adult congenital heart disease (ACHD), addressing critical gaps in care and reflecting advancements in the field.
Addressing Critical Gaps in Care
A critically important focus of the updated guidelines is improving the transition of care for patients moving from pediatric to adult cardiology. “A lot of patients who are transitioning from pediatric to adult care fall through the cracks,” a senior official stated. “We still have a lot of patients who stop receiving specialized care as they transition and transfer from pediatric to adult care, and a lot of patients who can’t access physicians for other reasons like insurance or geography.” This highlights a critical need to bridge the gap in care during the ofen-arduous transition from pediatric to adult cardiology.
Exercise, Mental Health, and Family Planning: A Holistic Approach
Beyond specialized cardiac care, the guidelines address often-overlooked aspects of well-being for individuals with ACHD. Updated recommendations support a more nuanced approach to exercise and physical activity, stating that “participation in competitive sports is reasonable following a comprehensive evaluation by an ACHD specialist that incorporates functional status and individualized assessment of risks and benefits.” This offers a more optimistic outlook for active individuals with congenital heart conditions.
Recognizing the psychological burden often carried by these patients,the guidelines also underscore the importance of mental health and neurocognitive assessment. “Our patients have a lot of challenges with anxiety and depression, so its vital to discuss that with patients or consider sending them for further evaluation,” a senior official noted.
Furthermore, the guidelines provide updated recommendations regarding birth control options, pregnancy, and childbirth. Preconception counseling, conducted in partnership with an ACHD cardiologist, is strongly advised to discuss potential genetic risks, maternal and fetal health concerns, and safe birthing strategies. The guidelines offer reassurance that vaginal delivery is generally safe for most pregnant patients with ACHD, provided appropriate risk stratification and monitoring are in place.
Advancements in Treatment and Future Research
the updated guidance also encompasses advancements in surgical practices,guideline-directed medical therapy for heart failure in ACHD patients,and the management of specific conditions like tetralogy of Fallot and Eisenmenger syndrome. A key focus is placed on vigilant monitoring for endocarditis in patients with malfunctioning bioprosthetic pulmonary valves, and updated strategies for managing secundum atrial septal defect coupled with pulmonary arterial hypertension now include closure procedures.The guidelines also address the frequency of Fontan screening for liver disease, a common complication in patients who have undergone Fontan palliation.
Looking ahead,the guidelines emphasize the critical need for further research. This includes determining the optimal timing for ACHD interventions and developing tailored geriatric care approaches as the population of adults with congenital heart disease continues to age. “We’ll continue to push the field to answer the questions because the patient population is not going anywhere – it’s only getting larger,” a senior official saeid. “In particular, our most complex patients are our fastest-growing group, and my hope is that some of the identified gaps will push people to try to answer those questions around what is the most efficient and effective way to deliver care to our patients.”
The development of these guidelines involved a multidisciplinary committee of specialists in ACHD cardiology, interventional cardiology, congenital cardiac surgery, heart failure, and electrophysiology, alongside advanced practice nurses and a patient advocate. The guidelines were developed in collaboration with and endorsed by the Heart Rhythm Society, the International Society for Adult Congenital Heart Disease, and the Society for Cardiovascular Angiography and Interventions, and were published in both JACC and Circulation.
