Congenital heart disease (CHD) is the number one birth defect in the U.S., affecting nearly 40,000 of the nearly four million live births each year. These patients often require lifelong care, and as they reach adulthood, challenges are seen when transitioning from a pediatric cardiologist to an adult CHD (ACHD) specialist.

A study published earlier this year in the Journal of the American College of Cardiology found that gaps in cardiology care for ACHD patients are common, and first occur in patients who are around 19 years of age who are transitioning to adult services.¹

Recognizing that these gaps in care exist, the ACC partnered with the Adult Congenital Heart Association (ACHA) last year to create the Provider Action for Treating Congenital Hearts (PATCH) program, which aims to create learning opportunities and collaboration between general cardiologists and ACHD specialists. The program includes regional teams of cardiologists across the continuum of care to help implement grassroots efforts to increase awareness of ACHD ACC/American Heart Association (AHA) care guidelines, increase patient access to ACHD-trained cardiologists and centers of excellence, create networking opportunities between ACHD specialists and cardiologists, provide ACHD patient resources to providers for distribution, and provide continuing medical education resources specific to the complex needs of the ACHD population.

The program is co-chaired by Juan Villafane, MD, FACC, professor of pediatric cardiology at the University of Kentucky, Lexington, and immediate-past governor of the ACC Kentucky Chapter; Michael Landzberg, MD, FACC, director of Boston Adult Congenital Heart and Pulmonary Vascular Group; and Curtis Daniels, MD, FACC, professor of Internal Medicine and Pediatrics at Ohio State University and director of the Columbus Ohio Adult Congenital and Pulmonary Hypertension Program at Nationwide Children’s Hospital in Columbus.

“Caring for adults with CHD is a ‘team sport,’ one that brings out the best assets of the team members to create a greater whole than the individual parts,” said Landzberg. “Critical to such is knowledge of care principles specific to adults with CHD, being aware of resources available for greater education and expertise in ACHD care, and building provider networks designed to allow for most optimal communication between all levels of ACHD care providers and experts.”

The co-chairs of the PATCH program knew that tapping ACC’s chapters would be key to achieving the goal of improving the care of ACHD patients by connecting cardiovascular professionals with ACHD tools and resources, and since the creation of the PATCH program, five ACC chapters have conducted pilot PATCH grassroots programming: the Georgia Chapter, the California Chapter, the Michigan Chapter, the Massachusetts Chapter, and the Ohio Chapter. Each chapter includes a team of seven individuals comprised of ACHD specialists, adult and pediatric cardiologists, ACHD patients, ACC executive directors, ACC staff and members from the ACHA and ACC’s Adult Congenital and Pediatric Cardiology (ACPC) Membership Section. “This diverse team is ideal to incorporate creative ideas from each particular member’s perspective and from all organizations represented,” said Villafane.

Villafane adds that “ACC’s chapters are uniquely qualified to carry out the objectives of the PATCH program.” Daniels agrees, and notes how “working with the chapters allows not only a way to build educational programming but also the chapter leadership can guide and direct the PATCH program toward specific local needs related to ACHD that vary from chapter to chapter.”

Among the five pilot PATCH programs, programming and activities have varied. In November 2012, the Georgia Chapter kicked-off the pilot program with a PATCH session entitled ACHD 101, which provided an overview of common and important ACHD patient care issues. “We were able to bring together cardiologists from all over the state and educate them not only on ACHD but on the importance of ACHD follow-up and the fact that ACHD really is a subspecialty that requires specific expertise,” said Robert N. Vincent, MD, CM, FACC, past governor and PATCH leader of the ACC Georgia Chapter. One year later, the chapter is still expanding the program, and the ACHD cardiologists have been invited to present at other practices and conferences in order to promote the PATCH program.

The California Chapter has held numerous grand rounds and facility presentations throughout the state. Information on ACHD California treatment facilities have been listed on the California Chapter’s website, and PATCH leaders have been invited to speak at several symposiums and meetings. “It has been a positive initiative for California,” said John B. Gordon III, MD, FACC, president and PATCH leader of the ACC California Chapter. “Relationships between institutions in California have been established that did not exist before.” He adds that “collaborative research is likely to occur as a consequence of our pilot project.” Gordon adds that moving forward, “we are reaching out to the Colorado and Arizona chapters to help them facilitate PATCH initiatives.”

Meanwhile, the Michigan Chapter held PATCH presentations at its chapter meeting in September, and PATCH representatives have been invited to speak at numerous educational events and have given Grand Rounds at several local hospitals. “The PATCH program has provided an excellent opportunity for networking between the adult congenital practitioners and general cardiologists in the state,” said Timothy Cotts, MD, FACC, director of the ACHD Program at the University of Michigan Health System and PATCH leader for the Michigan Chapter.

The Massachusetts Chapter has also incorporated PATCH into its annual chapter meeting, and has incorporated ACHD Board Review courses for cardiology fellows. There are also plans for increasing local outreach. “In order to truly provide longitudinal, patient-centered care to the ACHD population, it is essential that general cardiologists are armed with the knowledge to confidently manage routine care and recognize issues which may require more specialized care,” said Ami B. Bhatt, MD, FACC, director of the ACHD Program at Massachusetts General Hospital, and PATCH ACHD Program Director for the Massachusetts Chapter. “The PATCH program is designed to help accomplish this goal, with the recognition that each state may have unique issues which PATCH can help address and that the relationships which PATCH fosters between local caregivers and ACHD specialists will continue to evolve as the ACHD patient population continues to age and evolve as well.”

Meanwhile, the Ohio Chapter recently included a PATCH lecture at its annual chapter meeting, and has produced a resource page on its website with contact information for the ACHD Ohio programs. “The resource page also includes contact information for ACHD specialists and nurses available to provide ACHD educational programming at local community hospitals,” notes Daniels, who is also ACHD Program Director and PATCH Program Educator for the ACC’s Ohio Chapter.

As PATCH program continues to grow, all ACC chapter members are encouraged to partake in educational ACHD webinars focused on various aspects of ACHD care, to attend local, chapter-wide, and regional educational ACHD care symposium or smaller local practice-based venues, and can partner with other smaller and larger ACHD care sites so as to improve ACHD knowledge as well as to increase patient potentials for expert care. “Partnerships and networks of ACHD care providers are a critical armamentarium necessary to keep adults with CHD at optimal health and productivity,” adds Landzberg. “PATCH aims to fight the potential indifference that insufficient education might bring to ACHD care by engagement of internal medicine cardiologists at the ACC Chapter level.”

PATCH is not limited to the five pilot programs. There are several chapters that have voluntarily incorporated ACHD lectures, live sessions and ACC/AHA ACHD literature in their chapter meetings. If you are interested or would like more information about PATCH, contact smitchel@acc.org.

---

Reference:

1. Gurvitz, M, et al. Prevalence and Predictors of Gaps in Care Among Adult Congenital Heart Disease Patients: HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol. 2013;61(21):2180-4.

Keywords: Heart Diseases, Cooperative Behavior, Pediatrics, Cardiology, Hypertension, Pulmonary, Hospitals, Community, Sports, Live Birth, Massachusetts, Pregnancy, United States, Cardiology Magazine, ACC Publications

< Back to Listings