ACTION Publication

Patient and Parent-Reported Outcomes in Paediatric VAD Support: A Multi-Center ACTION Learning Network Feasibility and Pilot Experience

Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality but are underutilised in paediatric cardiac care. This ACTION study, Patient and parent-reported outcomes in paediatric ventricular assist

Patient and Parent-Reported Outcomes in Paediatric VAD Support: A Multi-Center ACTION Learning Network Feasibility and Pilot Experience Read More »

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study

One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study Read More »

Initial Multicenter Experience with Ventricular Assist Devices in Children and Young Adults with Muscular Dystrophy: An ACTION Registry Analysis

Purpose Cardiac disease results in significant morbidity and mortality in patients with muscular dystrophy (MD). Single centers have reported their ventricular assist device (VAD) experience in specific MDs and in

Initial Multicenter Experience with Ventricular Assist Devices in Children and Young Adults with Muscular Dystrophy: An ACTION Registry Analysis Read More »

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION

The results of an ACTION-wide survey of pediatric cardiology providers are detailed in the latest ACTION publication, Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD):

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION Read More »