New Multicenter Network Targets Advanced Heart Failure

A new network comprising medical centers around the country is working to improve care for children with advanced heart failure. Eighteen centers across North America have come together to form a collaborative called ACTION, or Advanced Cardiac Therapies Improving Outcomes Network, which is being spearheaded by Cincinnati Children’s and Lucile Packard Children’s Hospital at Stanford.

A ventricular assist device (VAD) is used to mechanically support the heart and improve blood flow to the body, with the goal of a heart transplant or to support the patient for the rest of his or her life.

“Approximately 30 percent of patients with a ventricular assist device have a stroke,” says Angela Lorts, MD, medical director of the Mechanical Circulation Support Program. “The goal of ACTION is to work together and learn from one another to decrease these adverse events.”

ACTION members aim to use quality improvement methodology to standardize protocols in treating pediatric patients who have had a VAD implanted. They have also begun building a patient registry to collect critical information for evaluating outcomes.

“Each of our centers has relatively few patients of this type,” Lorts says. “When we pool our resources, that small patient population becomes big, and helps us better see similarities and differences that can help us standardize care.”

An important aspect of the network is parent representation. ACTION will use parent input to help develop support systems and educational materials for families.

ACTION is currently accepting new centers to the group.

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