A Sister’s Love Uplifts Hearts

Robert Beekman HeadshotThis post was authored by Robert Beekman, III, MD, FACC, chair of ACC’s Adult Congenital and Pediatric Cardiology (ACPC) Section.

This year at ACC.16 several congenital heart disease (CHD)-focused sessions and events will take place, including an ACPC Section “CHD Community Day” focused on “Using Data to Improve CHD Care Across the Lifespan.” Other events include the 47th Annual Louis F. Bishop Lecture given by Carole A. Warnes, MD, FACC, on “Adult Congenital Heart Disease: The Challenges of a Lifetime” and the 2016 Dan G. McNamara Lecture on “Neurodevelopmental Outcomes in CHD: Where Have We Been and Where Are We Going?” given by Jane Newburger, MD, MPH, FACC. (Check out the Congenital Heart Disease Learning Pathway for more CHD sessions).

I am personally excited, however, to showcase the winner of ACC’s first “Design-a-Tie: Raise CHD Awareness” contest. The contest was open to anyone with a connection to CHD and a vision to share. The submissions we received from across the country were all amazing. However, one stood out from the rest. Continue reading

Congenital Heart Disease Awareness: Transitioning ACHD Patients Into Specialty Care

Marion Rae headshotThis article was authored by Marion McRae, ACNP-BC, a nurse practitioner in the Guerin Family Congenital Heart Program at Cedars-Sinai Medical Center in Los Angeles, CA.

Congenital heart disease (CHD) occurs in close to 1 percent of births with over 90 percent living to adulthood. There are now more adults living with CHD than children due to successful surgical and medical treatment over the last six decades. Unfortunately, many adults with CHD have fallen out of congenital heart care either because they were told they were surgically “fixed” or because they were never referred to adult congenital heart disease (AHCD) providers upon reaching adulthood.

It is now known from decades of follow-up that there can be life-long consequences of even the simplest congenital heart surgeries. In addition, we now know that many individuals with complex CHD repairs that have a single ventricle or a systemic right ventricle will experience early heart failure, arrhythmias, and far-reaching manifestations of surgical procedures, such as the Fontan operation, that subject the body to systemic venous hypertension leading to liver cirrhosis, pulmonary hypertension, esophageal varices, protein-losing enteropathy, plastic bronchitis, etc. Many of these individuals will go on to need a heart transplant or multi-organ transplantation in their second to fourth decade of life.  Continue reading

The Responsibility and Power of Advocacy

This post was authored by Ada Stefanescu, MD, a fellow in training and a member of ACC’s Adult Congenital Pediatric Cardiology (ACPC) Section.

“You all have no idea how powerful your message is, and how powerful you are.”

This was the statement from a professional political consultant to the attendees of the 2015 ACC Legislative Conference. The meeting brought over 400 ACC members together for three days in Washington, DC, to discuss issues on Capitol Hill that impact our patients and our practices. He was right: as advocates for our patients, we saw the power we have when we bring their stories and our perspective – from the trenches in the hospital, the clinic and the lab – to the table of the legislators and administrators. Continue reading

ACC Convenes a Village For Congenital Heart Disease Patients

ACC_10_05_13_0001This post was authored by Curtis J. Daniels, MD, FACC, co-chair of the Adult Congenital Heart Disease Working Group of the ACC Adult Congenital and Pediatric Cardiology Section.

What if I told you that there was a newly recognized disease process that affects every patient with a certain form of congenital heart disease (CHD) physiology, and that there is no clear direction on how to diagnose, evaluate or manage this disease. Naturally, you would want to rally experts in the field and begin to develop a plan of action.

This rally of experts is exactly what the ACC organized – the first-ever multidisciplinary CHD Stakeholders Meeting held last month at Heart House in Washington, DC – to address the issue of Fontan Associated Liver Disease (FALD). Experts in congenital cardiology (pediatric cardiology, adult congenital heart disease), hepatology (pediatric and adult), CHD cardiothoracic surgery, epidemiology, patients and families, and those representing stakeholder societies, including the American Heart Association, the American Academy of Pediatrics, the American Association for the Study of Liver Diseases, the United Network for Organ Sharing, surgeon societies and patient and international adult CHD societies came together to describe the gaps in knowledge, clinical care, and research related to FALD, and to propose solutions moving forward. Continue reading

A Call to Action: Pediatric Cardiac Care and the Global Health Agenda

Jenkins_KathyThis post was authored by Kathy Jenkins, MD, MPH, FACC, immediate past chair of the ACC’s Adult Congenital and Pediatric Cardiology Section; professor of pediatrics, Harvard Medical School; senior vice president and chief safety and quality officer, Boston Children’s Hospital; and Children’s HeartLink International Advisory Board Member.

The time is right to improve access to treatment of congenital heart disease (CHD) for children in underserved parts of the world. In May, the World Health Assembly adopted a resolution on surgical care and anesthesia as a component of universal health coverage. Surgery for birth defects was included in this resolution. (For more on this topic, read the blog World Health Assembly: A Time For Renewed Commitment to Reducing NCDs.) Continue reading

Population Health and Primary Prevention in the Spotlight

MartinThis post was authored by Gerard R. Martin, MD, FACC, chair of the ACC’s Population Health Policy and Health Promotion Committee.

We’re currently at a crossroads of health care delivery and health promotion. Up until now, we, as cardiovascular professionals, have been laser focused on secondary prevention, only scraping the surface of primary prevention. While technological and educational advances over the last few decades have resulted in a significant reduction of cardiovascular disease (CVD) in the U.S., the burden of CVD is set to increase 57 percent by 2020 worldwide.

To adjust to this new landscape, we must shift the paradigm from treatment to prevention and begin moving towards population health if we want to kick CVD off the list as the world’s #1 killer. This is no easy task. Population health – which is at a complex intersection between an increasingly diverse population, an evolving health care system, traditional public health and elaborate social policies – is not easy to define. I can guarantee that each and every one of us has a different perspective on the topic, making it difficult to come to a consensus on how best to move forward. Continue reading

The Future of Graduating ACHD Fellows

ACC_10_05_13_0001This post was authored by Curt J. Daniels, MD, FACC, a member of the ACC’s Adult Congenital and Pediatric Cardiology (ACPC) Section, and a professor of Internal Medicine & Pediatrics at The Ohio State University and Nationwide Children’s Hospital in Columbus, OH.

Congenital heart disease (CHD) is the most common birth defect occurring in about one in 100 live births. Incredible advancements in the care of children with CHD have led to improved quality of life and survival, and more patients today reach adulthood than ever before. Because of this, the proportion of children vs. adults with CHD has shifted over the last decade and there are now more adults than children living with CHD by a 2/3rd margin. This is fantastic news for the more than 40,000 infants born with CHD each year in the U.S. Continue reading

Transparency and Truly Informed Consent: A Modest Proposal

Robert Beekman HeadshotThis post was authored by Robert H. Beekman, III, MD, FACC, chair of the ACC’s Adult Congenital and Pediatric Cardiology Section and Leadership Council.

A fundamental principle of patient-centered care is patient autonomy.  Essentially, this means that patients are respected as independent agents who make informed decisions about their health care. Of course, informed decisions are evidence-based and therefore require data. No data = no informed decisions. Clinicians have an ethical obligation to respect and to promote patient autonomy.

Transparent sharing of medical data is a hot topic in 2015. Patients are pleading for it. But the concept of transparently sharing outcomes data with patients has elicited concerns from many outstanding, well-meaning clinicians: transparency may be misleading if the data aren’t perfect (complete and accurate); the data must be risk-adjusted; the data must be context-adjusted; there is uncertainty regarding exactly what data should be shared. These concerns are reasonable of course, and must be addressed before the system can become fully transparent. However, “waiting for perfect” will lead to paralysis. Continue reading

Unexpected Hurdles in my ACHD Fellowship: Providing End-of-Life Care

Keri Shafer HeadshotThis post was authored by Keri Shafer, MD, Boston Children’s Hospital and Brigham and Women’s Hospital.

The care of adults with congenital heart disease (ACHD) is a rich and rewarding experience filled with unique challenges, some unexpected. I began ACHD fellowship enthusiastically determined to improve my understanding of complex cardiac physiology with questions swirling through my mind such as “What is anatomic malposition?” and “How is a Kawashima performed?” I soon learned that ACHD care is much more than that. Quality care requires a comprehensive understanding of the function of every organ system as years of congenital heart disease can take a toll on the lungs, kidneys, liver, etc.  Growing up with congenital heart disease can also affect patients’ approach to nearly every aspect of their lives. Therefore, the most successful ACHD physicians continually demonstrate compassion, patience and excellent communication skills when caring for their patients and families. Paramount among these skills is the ability to help patients and families through what can be the most difficult part of care: end of life. Continue reading

Congenital Heart Disease Research: An Expanding Frontier

This post was authored by Ami Bhatt, MD, FACC, member of the Adult Congenital and Pediatric Cardiology Section.

In 1949, the National Institutes of Health began funding research in congenital heart disease (CHD). Since then, not only has the field grown, but the patients have aged successfully, introducing new frontiers for CHD research. As the field of cardiology has advanced impressively in the past four decades, the field of CHD has steadily grown and research efforts are now abundant. In addition to single center and multicenter academic efforts, collaboration with patient advocacy organizations and privately funded foundations has helped move research and registries forward. However, the time for an increase in the advancement of scientific inquiry is beginning now. Continue reading