NEW ORLEANS — Patients with congenital heart disease often fail to get the cardiology follow-up they need, on the basis of the records of 643 patients from Canada who were followed through age 22.
Although “most congenital heart disease [CHD] lesions require life-long cardiology follow-up,” this follow-up was not seen for 61% of all the CHD patients in this representative group once they were 18–22 years old, and cardiology follow-up did not occur at age 18–22 for 34% of the patients with “severe” CHD lesions, Dr. Andrew S. Mackie said at the annual meeting of the American College of Cardiology.
Cardiology follow-up was often lacking even though these patients remained under ongoing medical care. The analysis showed that 87% of all of the CHD patients followed were seen by a primary care physician at least once when they were 18–22 years old. A better job must be done to educate primary care physicians that patients with CDH require ongoing follow-up by a cardiologist, said Dr. Mackie, a cardiologist at Montreal Children's Hospital.
“These patients must be seen by a cardiologist,” agreed Dr. Joseph K. Perloff, a CHD specialist and emeritus professor of medicine and pediatrics at the University of California, Los Angeles.
The study used data from the Canadian health insurance system to identify and track 643 people who were born in the province of Quebec in 1983, were diagnosed with a CHD before age 6, and were still alive in 2005. All were seen by a cardiologist at least once when they were age 0–5, when they were first diagnosed. The analysis then used Canadian medical records to identify their visits to cardiologists and primary care physicians during three stages: age 6–12, 13–17, and 18–22.
Virtually all of the patients were seen by a primary care physician—a pediatrician, family practice physician, or internist—at least once during each of these life stage. But substantially fewer had at least one follow-up examination by a cardiologist, even at age 6–12. Among the 122 patients (19%) with severe CHD—endocardial cushion defect, tetralogy of Fallot, a univentricular heart, transposition of the great arteries, truncus arteriosus, and hypoplastic left heart syndrome—a higher proportion were followed by a cardiologist, but even in this subgroup expert follow-up was lacking for a significant number of patients, Dr. Mackie said.