Hearts & Minds: Neurodevelopment in Pediatric Heart Failure and VAD Patients

News, Updates

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 and family resources specific to neurodevelopment in pediatric heart failure and VAD patients, and better understand current practices among ACTION sites specific to neurodevelopmental care […]

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Teenager Fontan Referral

Considerations for Advanced Heart Failure Consultation in Individuals With Fontan Circulation: Recommendations From ACTION

ACTION Publication, Publications

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 between centers, and many individuals die from Fontan circulation-related complications either after late consideration for advanced heart failure therapies or having never seen a heart

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Pediatric Heart Failure Toolkit

News, Updates

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 to MyACTIONEducation.org > Providers > ACTION Library > Projects > Heart Failure Resources An Introduction to Pediatric Heart Failure Heart Success Communication Discharge Plan for

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SynCardia OPS

News, Updates

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, fluids status and emergency situations.

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

ACTION Publication, Publications

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 device support: a multi-center ACTION learning network feasibility and pilot experience, describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young

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The Pulse, January 2023

The Pulse — January 2023

News, The Pulse

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

ACTION Publication, Publications

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.

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Fall 2022 Meeting

News, Updates

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 Part 3 – New Releases, Suspense & Thriller Part 4 – Self Help, Business & Leadership

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Ventricular Assist Device Outcomes in Infants and Children With Stage 1 Single Ventricle Palliation

ACTION Publication, Publications

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 outcomes in infants with stage 1 single ventricle (SV) palliation, this study is the first multicenter registry analysis focused on this challenging and understudied cohort

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