Spring 2023 Meeting
Missed us at ISHLT? Download the full slide deck to see what we covered.
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Hearts & Minds: Neurodevelopment in Pediatric Heart Failure and VAD Patients
Prompted by needs and interests of our Families in ACTION (FACT) Committee, ACTION recently joined forces with a fellow Cardiac Networks United organization, the Cardiac Neurodevelopmental Outcome Collaborative to: develop patient
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Considerations for Advanced Heart Failure Consultation in Individuals With Fontan Circulation: Recommendations From ACTION
Individuals with Fontan circulation are at risk of late mortality from both cardiac and noncardiac causes. Despite the known risk of mortality, referral indications for advanced heart failure care vary
Pediatric Heart Failure Toolkit
Check out ACTION’s Pediatric Heart Failure Toolkit. Download patient and care team friendly handouts below. Providers For more tools, including a Heart Failure Daily Communication Checklist and a Heart Failure Discharge Plan login
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SynCardia OPS
Check out the newest One Page Summary (OPS) featuring the SynCardia (TAH-t). The OPS includes device size selection, components, function, settings and readings, as well as highlighting anticoagulation, blood pressure,
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
The Pulse — January 2023
Happy Fall! We are looking forward to seeing you virtually during our Fall Meeting on Tuesday, November 8, from 1–5pm ET. Registration details are included below.
We have had a busy couple of months since our last newsletter in July, including the pilot launch of the Heart Failure registry, a successful Fontan Referral design meeting, and reaching over 1,000 patients entered into our VAD Registry. Join us for our Fall Meeting to see what’s coming for the rest of 2022!
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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.
Fall 2022 Meeting
Missed the Fall 2022 Meeting? We’ve put together an ACTION Anthology! See the videos below to catch up. Part 1 – Prologue, History, & Pre-Print Part 2 – Cooking, References
Ventricular Assist Device Outcomes in Infants and Children With Stage 1 Single Ventricle Palliation
ACTION Learning Network investigators recently published Ventricular Assist Device Outcomes in Infants and Children With Stage 1 Single Ventricle Palliation in the November 2022 issue of the ASAIO Journal. Examining
