Addressing Heart Failure in Adult Patients with CHD With Ari Cedars, MD

At the Heart Failure Society of America (HFSA) Annual Scientific Meeting 2025 in Minneapolis, MN, Ari Cedars, MD, associate professor of medicine and pediatrics and director of the Adult Congenital Heart Disease (ACHD) program at Johns Hopkins University, spoke on challenges and disparities in diagnosing and evaluating heart failure (HF) in patients with ACHD.1

The most common congenital abnormality in newborns, congenital heart disease (CHD), often requires repeated surgical or interventional procedures and lifelong specialist follow-up. However, due to significant advancements in cardiothoracic surgery and pediatric cardiology in recent years, most patients born with CHD survive into adulthood. Of course, with the increased life expectancy of patients with CHD comes a similarly increased prevalence of patients with ACHD.2

HF is the leading cause of death among patients with ACHD, with a reported relative contribution between 17% and 42%. Diagnosis can often be challenging, due in part to largely nonspecific signs and symptoms. Additionally, symptoms typically appear differently in patients with ACHD than in the general population, given the comparatively complex cardiac history of the ACHD population.2

The editorial team at HCPLive sat down with Cedars to discuss his presentation. In addition to these diagnostic challenges, he spoke about the relative lack of specialized ACHD clinicians, given that the majority work in an academic setting, rather than a clinical one.

“I think there are disparities intrinsic to having congenital heart disease inasmuch as the workforce is limited and they largely practice out of large academic centers, so the majority of people with congenital heart disease have to travel some distance to see a provider who’s specialized,” Cedars told HCPLive.

Cedars also noted the lack of clinical trials for HF medications in patients with ACHD. Thus far, no medications have been explicitly confirmed. However, a paper published in 2020 suggested beta blockers, mineralocorticoid receptor antagonists, diuretics, and renin-angiotensin-aldosterone system (RAAS) blockers in patients exhibiting increased neurohumoral and cardiac autonomic activity.2

“I think we really need a lot more therapeutic trials in the adult congenital heart disease population,” Cedars said. “Admittedly, it’s difficult to study the adult congenital heart disease population due to heterogeneity and small population size, but we have our hands tied in many cases regarding getting clinical care for patients or getting appropriate drugs for them. I think that having greater data available would really help direct our management in many cases.”

Ultimately, Cedars suggested a variety of methods by which clinicians can improve outcomes for these patients. In his presentation, he encourages keeping an open mind regarding definitions of HF in the ACHD population, as well as highlighting the importance of targeted intervention.1

“If you meet an adult congenital heart disease patient, make sure that they’re getting referred for good, specialized care,” Cedars said. “And then make certain that you’re not using any one metric, any one snapshot, as a definition for heart failure in that population, but rather gather a series of data over time to know where the patient is and what direction they’re going and use that to direct your care.”

References

1. Cedars A. Evaluating Heart Failure in ACHD Patients: Diagnostic Challenges, Risk Stratification and Disparities. Presented at the Heart Failure Society of America (HFSA) Annual Scientific Meeting 2025. Minneapolis, MN. September 26-29, 2025.

2. Leusveld EM, Kauling RM, Geenen LW, Roos-Hesselink JW. Heart failure in congenital heart disease: management options and clinical challenges. Expert Rev Cardiovasc Ther. 2020;18(8):503-516. doi:10.1080/14779072.2020.1797488