The ACTION VAD registry: A collective five-year experience

Background: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) began in 2018 as a collaborative learning health system committed to improving outcomes in pediatric heart failure, including children and adults with congenital heart disease, supported with ventricular assist devices (VADs). This report describes patient and device characteristics, and outcomes through 1-year post-implant. Methods: The ACTION VAD registry report was created from data submitted to the ACTION learning network from April 2018 to June 2023. It includes 1,430 devices implanted in 1,220 pediatric patients (≤18) from 57 sites across North America. Results: Males comprised 55% of the registry patients. The median age was 3.7 years with a median implant weight of 13.6 kg; 36% of the cohort was <10 kg. Nearly 40% of patients had a primary diagnosis of congenital heart disease (CHD). Patients with CHD represented 26% of VAD implants in 2018 which increased to 42% in 2023 (p = 0.03). At implant, 25% of patients were supported with extracorporeal membrane oxygenation (ECMO), 4.9% with dialysis, and 54% were mechanically ventilated. Paracorporeal pulsatile pumps comprised 40.2% of implants, followed in incidence by paracorporeal continuous flow (28.5%), and implantable continuous flow (24.1%). The number of patients in the VAD Registry patients increased from 102 in 2018 to 256 in 2022, partly reflecting increased center participation in ACTION. Overall survival on support at 1 year was 79.2%, and the incidence of stroke was 13.7%. Infants demonstrated the poorest outcomes, with a 1-year survival of 72.9% and a higher incidence of stroke (20.8%). Conclusion: The 5-year ACTION VAD experience highlights the growing collaboration in the pediatric VAD community and changes in clinical practice. More work is needed to improve survival and limit adverse outcomes, especially in younger patients.