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.
This ACTION study was available online January 17, 2025 ahead of being published by The Journal of Heart and Lung Transplantation in Volume 44 (Issue 4) in April 2025. Congratulations to the authors:
- Jonathan B. Edelson MD
- Alexander Raskin
- Mohammed Absi
- Iki Adachi
- Othman Aljohani
- Anaam Alzubi
- Shahnawaz Amdani
- Alfred Asante-Korang
- Scott Auerbach
- Neha Bansal
- David Bearl
- Katerina Boucek
- Arene Butto
- Ryan Butts
- Jonathan Byrnes
- Chesney Castleberry
- Jennifer Conway
- Nhue Do
- John Dykes
- Joshua Friedland-Little
- Lawrence Greiten
- Heather Henderson
- Daphne Hsu
- Aamir Jeewa
- Anna Joong
- Sairah Khan
- Christopher Knoll
- Jodie Lantz
- Sabrina Law
- Angela Lorts MD MBA
- Katsuhide Maeda
- Hugo Martinez
- Lindsay May
- Mary Mehegan
- Deepa Mokshagundam
- Catherine Montgomery
- Matthew O’Connor MD
- John Jerry Parent
- David M. Peng
- David N. Rosenthal
- Aryaz Sheybani
- Muhammad She’d
- Lana Shugh
- Natalie Shwaish
- Joseph Spinner
- Jennifer Su
- David Sutcliffe
- Hari Tunuguntla
- Christina VanderPluym
- Gabrielle Vaughn
- Gonzalo Wallis
- Sarah Wilkens
- Matthew Zinn
- Robert Niebler MD
- On behalf of the ACTION collaborators
CITATION
Jonathan B. Edelson MD, et al. The ACTION VAD registry: A collective five-year experience. The Journal of Heart and Lung Transplantation. Volume 44, Issue 4, 2025, Pages 530-540. ISSN 1053-2498, https://doi.org/10.1016/j.healun.2025.01.007.
