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- William A. Zoghbi, MD, FACC, ACC President⁎ ()
- ↵⁎Address correspondence to:
William A. Zoghbi, MD, FACC, American College of Cardiology, 2400 N Street NW, Washington, DC 20037
- Kathy Jenkins, MD, MPH, FACC, Chair, ACPC Council and Section
Congenital heart disease (CHD) is the number one birth defect in the United States, affecting nearly 40,000 of the nearly 4 million live births each year. Thanks to advances in treatment and care over the last several decades, the number of children with CHD living into adulthood is rapidly growing. For the first time, more adults are living with CHD than children. For the estimated 2 to 3 million individuals living with CHD, continued advances in medical care, research, and a health care system that makes quality team-based care accessible are critical to ensuring these patients can continue to thrive and benefit from the successes of the past 60 years.
It is believed that nearly 1.5 million U.S. adults are living with CHD. Of these, at least 500,000 have a complex form of the disease, and will need lifelong specialized care, including surgeries, re-operations, interventional therapies, catheter ablations, and even cardiac transplant. Death and disability rates for patients with complex CHD rise dramatically after 30 years of age. Despite these sobering statistics, research indicates that up to 50% of families stop seeking cardiac care for their children by age 13 years, and <10% of adults currently receive recommended specialized cardiovascular care. Even more startling, estimates suggest that, at most, 50% of those with adult CHD receive any sort of cardiovascular care. This loss to care phenomenon results from a variety of complex reasons, including lack of access to appropriate care, insurance barriers, or not completely understanding the condition and the lifelong care that is needed.
In an effort to reverse these trends and ensure patients receive appropriate lifelong care as they transition out of pediatric care, the American College of Cardiology (ACC) established the Adult Congenital and Pediatric Cardiology (ACPC) Council and Section in 2004. We are grateful for Drs. David Sahn and Gerard Martin who led these initial efforts. The underlying concept of the Section was to ensure CHD professionals recognize that the care provided in childhood affects the quality of life for the CHD patient in adulthood. Likewise, to ensure continued quality of life, families, patients, pediatric cardiologists, and CHD surgeons must understand the need for lifelong specialized care, which includes care by an adult congenital cardiologist.
The ACPC Council and Section exist to facilitate and address the quality, advocacy, and educational challenges by educating families, patients, and the entire cardiac care team about the needs across a CHD patient's lifetime. More than 1,200 ACC members are currently part of the Section, with nearly 400 members actively contributing to activities designed to advance the care of both children and adults with CHD. The section, governed by the ACPC Council, is open to the whole CHD care team: pediatric cardiologists, adult congenital cardiologists, cardiac care associates (nurses, nurse practitioners, physician assistants), fellows in training (FITs), congenital heart surgeons, administrators, and adult cardiologists with an interest in CHD. The College is able to draw on the collective expertise of section members and address the educational and advocacy needs of the CHD community in a coordinated way—something that was difficult, if not impossible, to do prior to the creation of the ACPC Council.
The ACPC priorities include:
• promoting the need for lifelong, specialized care of CHD patients;
• engaging pediatric cardiology and adult congenital chiefs and their administrators;
• identifying meaningful pediatric and adult congenital quality care metrics;
• maintenance of certification and quality improvement activities relevant to the CHD professional;
• defining a CHD advocacy agenda specific to address the patient and professional needs of CHD; and
• engaging all members of the CHD care team to support patient- and family-centered care activities.
Clearly, patient education is critical to ensuring lifelong, continuous cardiovascular care. Pediatric cardiologists and members of the cardiac care team must emphasize to patients that CHD is repaired, not cured. The goal is not only to have CHD patients survive into adulthood, but to have adult CHD patients thrive and live longer, healthier, and productive lives. Partnerships with patient groups, such as the Adult Congenital Heart Association (ACHA), Children's Heart Foundation (CHF), and Mended Little Hearts, has enabled the College to collaborate with children and adult CHD patients on several educational activities including the National Congenital Heart Lobby Day. This annual event offers the opportunity for CHD patients and cardiologists to visit U.S. legislators arm-in-arm to share the story of CHD success and challenges.
One of the most pressing challenges facing adult CHD patients is the relatively small number of adult CHD specialists. Without enough experts, adult CHD patients are limited by when and where they can seek appropriate care. Because of this, the ACPC Section is working with pediatric cardiologists, general cardiologists, and other members of the cardiac care team to not only encourage collaboration with adult congenital cardiologists, but also educate these providers about the special needs of the adult CHD community. This concept is being piloted at the local level through the PATCH (Provider Action for Treating Congenital Hearts) Program. PATCH, which was inspired by a popular recurring session at the ACC's Annual Scientific Sessions, “ACHD for the General Cardiologist,” aims to improve care for the adult CHD patient by providing general cardiologists educational tools and recommendations for collaborating with adult CHD programs. Ultimately, the goal of the program is to promote dynamic partnerships between adult CHD specialty centers and community-level cardiologists in order to optimize quality of life and life expectancy for this vulnerable patient population. The ACC is working in partnership with the ACHA, which includes meetings at 5 ACC Chapters in 2012 and 2013, as well as a series of webinars aimed at adult cardiologists caring for adult CHD patients.
The ACC's strategy to promote lifelong specialized care for CHD patients extends beyond the cardiology care team and the patient partnership. For more than a decade, the ACC has been spearheading a multisociety effort to establish a subspecialty certification in adult CHD. The certification would be administered through the American Board of Internal Medicine (ABIM). It is expected that pediatric cardiologists and internal medicine cardiologists who have completed a 24-month adult CHD training pathway would be eligible to sit for the exam. A decision on whether to grant Adult CHD Subspecialty Certification is expected from the American Board of Medical Specialties (ABMS) by year's end.
The ACPC Section also has focused efforts to engage CHD administrators. This initiative parallels the College's increased emphasis on facilitating discussions and activities between the business and clinical care aspects of cardiovascular care. Under the auspices of the Section's Clinical Practice Working Group, several activities have been introduced to convene the CHD administrators, the pediatric and adult congenital cardiologists, and surgeons in discussions to define best practices and align CHD care around quality indicators. A major activity underway is to develop a set of candidate quality indicators across the ambulatory pediatric cardiology setting. As candidate metrics are developed, reviewed, and vetted, the ACPC Section will communicate and collaborate with critical stakeholders. Ultimately, the goal is to develop a set of evidence-based ambulatory CHD quality indicators that can be incorporated into a larger national campaign of best practices.
On the policy front, the ACC has been a leading advocate for universal screening of critical congenital heart disease (CCHD) in newborns. Based on research that indicates as many as 2,000 infants with unrecognized CHD are discharged from hospitals annually, the College and several other stakeholders advocated adding pulse oximetry screening for CCHD to the Recommended Uniform Screening Panel. In 2011, Health and Human Services (HHS) Secretary Kathleen Sebelius endorsed this recommendation. Since then, there has been a push by several ACC chapters working with other pediatric and cardiovascular societies to introduce policies to implement CCHD screening. Several states, including Indiana, Maryland, New Jersey, New Hampshire, Connecticut, and West Virginia, have passed legislation surrounding screening for CCHD. Several other states have legislation pending, legislation introduced, and/or have implemented pilot program throughout the state. The ACC's state government affairs team continues to collaborate and support efforts across ACC chapters to educate legislators on the importance of this inexpensive and lifesaving screening.
Improving quality of care for CHD patients is also a major goal. Recently, leaders from the Society of Thoracic Surgeons (STS) and the ACC's IMPACT Registry met with representatives from the National Institutes of Health to discuss opportunities to link the STS and IMPACT registry data in order to allow for longitudinal tracking of CHD patients undergoing CHD surgeries and CHD interventional procedures. There is great enthusiasm to move to this next phase and both registries have datasets that are harmonized for the purpose of linking the data. Next steps will include securing funding through a grant opportunity.
Although we still have a ways to go, the College and the CHD community at large have made important strides in addressing the challenges associated with managing a growing adult CHD population. We should all be very proud of the role we have played to date and excited about what future opportunities will hold. There is still much work to do, but working together we can continue to make progress in the treatment of CHD patients across the age continuum. We encourage everyone to check out the great work the ACPC is doing (www.cardiosource.org/acpc.) and to get involved in the Adult Congenital and Pediatric Cardiology Section.
- American College of Cardiology Foundation