University of Minnesota Health: Comprehensive Care for Patients with Adult Congenital Heart Disease

By Josh Garcia
Monday, February 18, 2019

University of Minnesota Health multidisciplinary team of specialists and subspecialists works collaboratively to identify, prevent and address complications related to adult congenital heart disease.

University of Minnesota Health heart specialists participate in a long tradition of delivering cutting-edge care for patients with heart disease. Heart specialists with the University of Minnesota performed the first successful ventricular septal defect repair and implanted the first partial artificial heart, or left ventricular assist device (LVAD). Additionally, the physicians conduct groundbreaking clinical studies on heart failure and congenital heart disease (CHD).

“Many of the first surgeries for CHD were performed at University of Minnesota Health,” says Cindy Martin, MD, Director of the Adult Congenital and Cardiovascular Genetics Center (ACCGC) and cardiologist with University of Minnesota Health. “We’re committed to building on that legacy.”

As part of that commitment, Dr. Martin and her colleagues formed the center 10 years ago with the goal of providing a medical home for adult patients with CHD. At other institutions, patients often had to explain their unique conditions to clinicians who were unfamiliar with the complexities of CHD.

“We wanted to create a place where these patients are considered the norm,” Dr. Martin says. “We understand their conditions and can tailor their care accordingly.”

A Burgeoning Field

Just recently the American Board of Medical Subspecialties recognized adult congenital heart disease (ACHD) as a separate cardiac subspecialty. While all three of the center’s adult congenital cardiologists are board-certified in ACHD, this special accreditation only became available in 2015. To be eligible for board certification, providers must have completed specialized fellowship training in ACHD or performed a significant portion of their clinical work with adult patients who have CHD.

Dr. Martin falls into the latter category and is also board-certified in heart failure and transplantation. Her two ACHD colleagues, Jamie Lohr, MD, and Kimara March, MD, are also board-certified ACHD cardiologists.

“The formalization of adult congenital specialists has been a new emphasis for the medical community over the past decade,” Dr. Martin says. “Part of that focus has been driven by the rapid expansion of the adult congenital patient population.”

Though CHD has been associated primarily with children in the past, that association is shifting toward an older demographic. Advances in surgical techniques and treatments have increased survivorship among children with CHD. Today, even children diagnosed with severe congenital heart disease have close to a 90-percent chance of surviving past age 18. As a result, the current population of Americans with CHD — an estimated 2 million or more — includes more adults than children.

“CHD is really an adult disease now,” Dr. Martin says. “Because of this, we need to treat patients’ CHD along with more routine and standard adult diseases and comorbidities.”

As patients with CHD age, they commonly develop complications such as irregular heart rhythms, heart valve issues, pulmonary hypertension and heart failure. Adult patients benefit from routine follow-up care from CHD specialists to address these complications, but many do not successfully transition to an ACHD specialist once they stop seeing their pediatric specialist. A study published in Circulation found that only 39 percent of adults between ages 18 and 22 who have CHD see an outpatient cardiovascular specialist regularly, even if they continue to see a primary care physician. The American College of Cardiology has estimated that only 10 percent of patients with ACHD actually receive care from adult congenital cardiologists.

According to Dr. Martin, almost half of the patients seen in the ACCGC have at least a three-year gap in specialty care.

“Frequently, these patients get lost to follow-up care when they move out of their parents’ house or go to college,” Dr. Martin explains. “Some may think they’ve outgrown their condition or that it was resolved by an earlier surgery, but even adults with simple CHD should at least have a consultation with an ACHD specialist to make sure no further testing or follow-up is needed.”

Care Transition Plans

University of Minnesota Health ACHD specialists work closely with the Heart Center at the University of Minnesota Masonic Children’s Hospital, and the ACCGC team includes multiple pediatric cardiologists to ensure young patients transition smoothly from pediatric to adult care.

“One of the unique aspects about our program is that we have both pediatric and adult cardiologists,” Dr. Martin says. “We intentionally created our clinic this way so that we can leverage their varying backgrounds and viewpoints.”

ACHD specialists begin developing formal care transition plans with pediatric cardiologists when patients are as young as 12 years old. Though children aren’t expected to navigate the healthcare system, parents and pediatricians begin teaching them the basics of their condition. As children mature, the program reinforces the importance of lifelong care for CHD until they are ready to transition to adult care.

“We individualize the process for each patient,” Dr. Martin says. “Some are ready to transition at 18 years old, whereas others may need to wait until their early or mid-20s.”

“We’re committed not only to patient education but to physician education as well. Pediatric and adult cardiology trainees spend time in the Adult Congenital and Cardiovascular Genetics Center even if they aren’t specializing in congenital heart disease. We want to spread awareness and provide exposure to these types of conditions so that providers can better facilitate care for their patients.”
— Cindy Martin, MD, Director of the Adult Congenital and Cardiovascular Genetics Center and University of Minnesota Health cardiologist

Filling the Gaps

Many adult patients do not recognize early signs and symptoms of serious complications stemming from CHD. As Dr. Martin explains, these patients have grown up with congenital conditions and are used to experiencing symptoms on a regular basis.

“A lot of times, these patients do not realize how advanced their symptoms are because they may have never felt ‘normal’,” she says. “By the time they present with more severe symptoms, things have often progressed significantly to the point where we may not be able to reverse some of the changes.”

Primary care providers may miss these signs as well, simply because they do not have the expertise to know what to look for and what questions to ask adult patients with CHD.

University of Minnesota Health specialists are trained to recognize and prevent complications linked to CHD, while utilizing advanced treatments that aren’t typical for other cardiovascular conditions.

“This is an area in which subspecialty training is crucial,” Dr. Martin says. “For example, typical heart failure treatment cannot be extrapolated to patients with CHD because they develop heart failure for different reasons than most patients.”

Because so many adult patients with CHD have not received the specialty care they need, University of Minnesota Health specialists have always taken steps to expand its CHD services and provide care for patients from birth through advanced age in a single healthcare system.

“Once patients establish care in our clinic, we can oversee all aspects of their treatment,” Dr. Martin says. “They can receive care from specialists and subspecialists without having to travel to multiple locations.”

Collaboration, Far and Wide

Team members with the ACCGC collaborate with a wide range of University of Minnesota Health specialists on patient cases. These include interventional cardiologists, surgeons, electrophysiologists, hepatologists, neuropsychologists, maternal fetal medicine physicians, social workers and more.

“The center has really grown,” Dr. Martin says. “We initially expanded our core ACHD team, but not too long after that, we added our electrophysiology team, catheterization team, imaging team and other services to accommodate our rapidly expanding patient population.”

These specialists collaborate to offer the full spectrum of treatments and aggressive risk factor modifications for patients with ACHD. These include catheter-based valve replacements, ablation procedures, pacemaker implantation, medication for pulmonary hypertension and newer mechanical circulatory support options.

“We offer Melody Transcatheter Pulmonary Valve Therapy for tetralogy of Fallot patients with pulmonary regurgitation,” Dr. Martin says. “Certain patients with heart failure also have the option of receiving an LVAD or heart transplantation.”

Several times a month, the ACCGC specialists hold ACHD conferences to discuss patient cases and potential interventions. In addition to cardiologists and cardiac surgeons, other University of Minnesota Health specialists who are involved in patient cases and trained to provide services to adult patients with CHD attend the conferences to share their expertise.

“Our imaging team attends these conferences because patients often require echocardiograms or MRIs as part of their care,” Dr. Martin says. “While these specialists work elsewhere at University of Minnesota Health, we have developed an interdisciplinary core team that covers all bases for our patients.”

University of Minnesota Health ACHD providers meet with patients at multiple locations, including at the Ridgeview Medical Building in Burnsville (pictured).

Close to Home

For patients who would benefit from comprehensive care but live significant distances from University of Minnesota Health clinics offering ACHD care, the center’s ACHD specialists work with them and their primary care providers to ensure their needs are met.

“We’re very open to pairing and co-managing patients with other cardiology and internal medicine colleagues,” Dr. Martin says. “If a patient lives eight hours away, we don’t want them to always have to visit us multiple times a year. We can often have the patient visit us once a year and coordinate with local providers for their other appointments.”

External providers are also encouraged to seek guidance about patient cases whenever necessary — an ACHD physician is always on call to field questions and provide advice. Providers can also speak to a dedicated scheduler if they need to arrange appointments for their patients.

“We want to be here as a resource for providers,” Dr. Martin says. “We recognize that these patients have unique needs, and sometimes that means a bit more effort on our part to bring care to patients where they are.”

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