Unlike many hospitals, UCH has both a pediatric program and an adult program for former pediatric patients. Kay, for instance, is qualified in both adult and pediatric care. There are now 1,200 people enrolled in the UCH program, which has added 200 patients a year over the past several years, he says. "We're almost at capacity, for the number, in our facility."
It's important to have an effective adult congenital multidisciplinary team to treat older patients, Kay says. In many instances, pediatric physicians are continuing to treat older patients into adulthood, but there are gaps in care, he says.
Congenital defects occur in about 1 in 120 births, according to the ACHA. Surgical repairs and other interventions are allowing babies born with serious congenital heart defects to live into adulthood. "The survival rate for children has gone up exponentially," about 95% to 98%, Kay says. "Children who never survived into adulthood a decade ago are now surviving in large numbers."
At least 75% to 80% of patients with congenital problems are not cared for in adult congenital heart centers, he adds. "Many of the [adults] are not receiving care at all. Many of them have the false impression that they were fixed as children. We believe there is an absolute need for practitioners in the field, and the field is going to continue to grow."
There is also is a growing need for follow-up care in an adult congenital heart subspecialty, Kay says. Survivors have a greater risk than other people of developing additional heart problems because of changing blood flow patterns in the heart. Long-term problems include rhythm disturbances, valve problems, heart failure, endocarditis and stroke.
Adult patients require the skills of a clinical team with experience in adult comorbidities, such as diabetes or hypertension, and can offer guidance about employment, pregnancy, and physical activity, Kay says. Adult patients who seek care in adult congenital heart centers report fatigue, exercise intolerance, chest pain, shortness of breath, or palpitations.
"Many adult congenital programs hadn't existed until the past few years," Kay says. "So many adult cardiology specialists had little or no exposure to patients and lacked the experience in understanding how to give them true optimal care." In December, the American Board of Medical Specialties created a physician certification in adult congenital heart disease as a subspecialty, which may increase the number of cardiologists who gain an expertise in that area, Kay says.
Success key No. 3: Atrial fib
Atrial fibrillation is a serious heart rhythm abnormality seen by physicians. It is marked by a rapid, irregular heartbeat originating in the small, upper chambers of the heart. If not treated effectively, it can lead to stroke, serious bleeding, cardiac arrest, and death.
Most people with atrial fibrillation have identifiable risk factors, such as high blood pressure or structural heart disease, and tend to be over age 60. About 6 million American adults have been diagnosed with atrial fibrillation or an irregular heartbeat. "It's not going away and it's on the rise," says Andre Gauri, MD, electrophysiologist with the Spectrum Health's heart and vascular program.
At Spectrum Health, over the years, many patients have been admitted for afib observation. As the country moves toward value-based care, this practice has been questioned, and Spectrum is one of many hospitals that realized its protocol of hospitalization for observation was unnecessary, Gauri explains.
As a result, Spectrum developed a dedicated atrial fibrillation clinic to improve evaluation of afib and improve care, Gauri says. The clinic team includes five board-certified electrophysiologists, six electrophysiology RN case managers, and two electrophysiology midlevel providers.
Spectrum realized that, until recently, "we were admitting patients essentially to do an outpatient workup half the time," Gauri says. "All these patients would get admitted to the hospital, get a whole bunch of tests, go home, and then follow up as an outpatient."
Instead, "if a 45-year-old patient with no prior history of severe cardio problems develops a rapid heartbeat, she can be put in the observational unit and then followed in the afib clinic within 48 hours, and other tests are done," Gauri says.