Specialized care team for Cardiomyopathy improves outcomes

Cardiomyopathy is a disease of the heart muscle itself. While other forms of cardiovascular disease are in the heart’s valves or blood vessels, cardiomyopathy means that the heart muscle doesn’t work as well as it should. Some kinds of cardiomyopathy are common – one in 500 Americans has hypertrophic cardiomyopathy, for example – while others are very rare. At the Inova Reinsch Pierce Cardiomyopathy Program, Inova’s specialized, multidisciplinary team of experts cares for patients with all forms of cardiomyopathy.

Symptoms of cardiomyopathy can include shortness of breath, fatigue, swelling in the legs, rapid heartbeats and chest pain. Some forms of cardiomyopathy can also cause trouble with the heart’s rhythm and raise the risk of cardiac arrest. But in recent years, new treatments and evolutions in genetic testing have improved the landscape of cardiomyopathy care. Having access to the diagnostic and treatment expertise of a team of cardiomyopathy specialists is key to positive outcomes for patients.

How Inova’s comprehensive cardiomyopathy program helps patients

The cardiomyopathy team at Inova includes cardiologists, nurse practitioners, patient care coordinators, imaging experts, research coordinators, registry experts and data analysts. In addition, because the program is part of Inova Schar Heart and Vascular, the team collaborates closely with other specialists such as electrophysiologists, cardiac surgeons and advanced lung disease physicians based on the individual patient’s needs.

“Inova strives to provide multidisciplinary care for a wide variety of complicated cardiomyopathy disease states,” said Mitchell Psotka, MD, PhD, Section Chief, Heart Failure and Transplant at Inova Schar Heart and Vascular. “Our team members have highly integrated partnerships with other medical and surgical subspecialists in rheumatology, dermatology, nephrology, hepatology, pulmonology and endocrinology. These multidisciplinary care groups are needed to provide the best care for conditions such as hypertrophic cardiomyopathy, genetic cardiomyopathies and inflammatory or infiltrative cardiomyopathies such as sarcoidosis, Chagas disease and cardiac amyloidosis.”

Available treatment options include medication to improve symptoms, ablation procedures, device implantation and a variety of surgical options. Inova also offers a robust clinical research program, enabling the cardiomyopathy team to offer patients leading-edge therapies and devices.

Should a patient’s cardiomyopathy progress beyond the point where medications can control it, Inova offers expertise in advanced heart failure, mechanical circulatory support and heart transplant. Inova’s team typically performs more than 40 heart transplants every year.

Care spotlight: hypertrophic cardiomyopathy clinic

Cardiovascular genetics is key to cardiomyopathy care

Some cases of cardiomyopathy are caused by a patient’s genetic makeup. For example, about 25% of patients who have a dilated cardiomyopathy will carry a genetic mutation that is the cause. If they have a family history of cardiomyopathy, that percentage can be as high as 50%. For a person who has hypertrophic cardiomyopathy, there is a 40 to 60% chance that there is a genetic cause. That’s why Inova’s cardiomyopathy program includes cardiovascular genetic testing and counseling.

At their first visit, patients see both an advanced heart failure cardiologist and a genetic counselor. Working together, the team asks questions and puts together a full picture of medical issues that have affected the family over three generations. “That really allows us to understand the health problems that have been going on in the family and determine whether there are any patterns that may suggest an inherited disease, cardiomyopathy or cardiovascular condition,” said Palak Shah, MD, MS, Director of the Inova Cardiovascular Genomics Center and Medical Director of Mechanical Circulatory Support for Inova Fairfax Hospital.

Next, the team talks with the patient and the patient’s family, explaining the benefits and limitations of genetic testing and answering the patient’s questions. If the patient or family members are interested, the team arranges testing. When the results arrive, the team meets with the patient and family members to discuss the test results and what they mean for the patient and for the patient’s family members.

“Through that process, we often end up managing not just an individual, but an entire family that is at risk for a genetic disease or has inherited the same genetic mutation,” Dr. Shah said. “That’s an important component of the multidisciplinary care we provide here.”

There are good reasons to consider genetic testing for patients with cardiomyopathy or their families. First, it can help the team predict whether additional family members are at a greater risk of developing the same condition. Second, there are some new medications that specifically target certain genetic mutations. That means knowing about genetic mutations may help patients qualify for treatments. Third, thanks to the genetic information captured through research across the world, it’s sometimes possible to predict how, for example, a dilated cardiomyopathy caused by a certain genetic mutation will behave over time.

“By understanding the specific mutation, we are better able to understand which patients are more likely to have aggressive disease – which patients are more likely to develop arrhythmias, for example – and which patients may benefit, or families may benefit, from earlier intervention,” Dr. Shah noted.

Improving patient outcomes

From our network of heart failure clinics to our hospital-based care and advanced therapies for late-stage disease, Inova’s cardiomyopathy team provides outstanding outcomes for patients. “Our philosophy aligns with Inova’s mission as a health system – to provide the best patient care, every time, every touch,” Dr. Psotka said. “By incorporating multidisciplinary subspecialty expertise, we are best able to provide that for our patients with cardiomyopathy.”

Learn more about the Inova Reinsch Pierce Cardiomyopathy Program.