Children with two subtypes of cardiomyopathy — hypertrophic or restrictive — are now dying on the waitlist at a rate 4-6 times higher than before the new criteria went into effect in 2016.
Recent attempts to improve waiting times and lower mortality rates for children needing heart transplants may have made the problem worse, new research suggests.
A study, published this week in the American Journal of Transplantation by cardiologists at UPMC Children’s Hospital of Pittsburgh examined the Organ Procurement and Transplantation Network's 2016 overhaul of criteria for prioritizing children awaiting heart transplants, and found no overall improvement in waitlist mortality rates.
In fact, mortality increased for some types of heart disease.
"Changes were made to prioritize sicker children with fewer treatment options — for instance, kids with congenital heart defects — but the reality we’re showing is that since the criteria change, transplant centers are using more listing status exceptions, essentially short-circuiting the intended benefit," said senior author Brian Feingold, MD, medical director of pediatric heart failure and heart transplantation at UPMC Children’s Hospital of Pittsburgh, in comments accompanying the study.
The new policy de-prioritizes children with cardiomyopathies. Because of that, the UPMC researchers found, clinicians are getting more exceptions to the policy for their cardiomyopathy patients, especially a subtype called dilated cardiomyopathy, so that patients will retain the highest listing status.
Since the revamped criteria was established, exceptions for dilated cardiomyopathy rose by more than 13-fold, yet the study shows high priority status makes no difference in the survival rates of these patients, the researchers found.
However, children with two other subtypes of cardiomyopathy — hypertrophic or restrictive — without an exception, are now dying on the waitlist at a rate 4-6 times higher than before the new criteria went into effect, the researchers found.
"We can't prove causality here, but it would seem that restrictive and hypertrophic cardiomyopathy patients have been disadvantaged by the criteria change," Feingold said.
"They're prioritized downward under the umbrella of cardiomyopathy, likely inadvertently, while children with congenital heart defects have not been able to benefit due to increased exception use," he said.
Feingold said the reason why patients with different subtypes of cardiomyopathy are faring so differently under the new guidelines is that children with dilated cardiomyopathy tend to be better candidates for implanted blood pumps called ventricular assist devices (VADs).
Considered a type of life support, VADs place patients higher on the waitlist. They also allow patients to rehabilitate, even leave the hospital, while waiting for a transplant.
Feingold said he hopes the findings will prompt discussions about improving waitlist criteria for children awaiting heart transplants.
"The chronic shortage of organ donors means that we must strive to optimize organ allocation as much as possible," he said. "It's very difficult to know all of the downstream effects of policy decisions like these, so we should continue to tweak and observe until we get it right."
“It would seem that restrictive and hypertrophic cardiomyopathy patients have been disadvantaged by the criteria change.”
Brian Feingold, MD, UPMC Children’s Hospital of Pittsburgh
John Commins is a content specialist and online news editor for HealthLeaders, a Simplify Compliance brand.
Since the revamped criteria was established, exceptions for dilated cardiomyopathy rose by more than 13-fold.
However, the study shows high priority status makes no difference in the survival rates of these patients.