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February 2022
Dear Community, We hope you all had a wonderful VADentine’s Day! We are looking forward to ISHLT in April, and our meeting location has been confirmed. We will send more reminders as it gets closer, but please note the ACTION Meeting at ISHLT will take place on April 26, 2022, from 3–6pm in Room 312 at the Hynes Convention Center. The meeting is open to any ACTION members attending ISHLT. We hope to see you there! Regards, 
Check it out!
NEW! — Member of the Month
We would like to recognize ACTION Members who are going above and beyond to improve outcomes for pediatric VAD & heart failure patients.Nominations are open to ALL members of ACTION (clinicians, patients, caregivers, researchers, industry & regulatory collaborators, etc.)Please submit March Nominations by March 17th. We will pick three ACTION members each month!Members of the Month will be highlighted in the Pulse and receive special ACTION swag! Nominators will also be entered into a raffle for a special prize. 
New Protocol: VAD Weaning Explant Protocol
The Harmonization Committee has released a new protocol for ACTION clinicians. Download and review the new ACTION VAD Weaning for Explant/Recovery document. This protocol, along with others, is located on MyActionEducation.org under Providers > ACTION Library > 2 Resources > Protocols and on Basecamp. Please email Lauren Smyth with any feedback or suggested edits. 
ACTION @ ISHLT: Look Who’s Talking
PATIENT FAMILY STORY Finding Heart — Juliana's Story
Juliana’s life started with a difficult journey. At 11 days old, Juliana waited for a new heart while her mother, Riki, fought breast cancer. Together as mother and daughter, they faced unexpected challenges, braved mounting treatments, endured long waits and recovery. Now, Riki shares their story in thanks to the community of support they found along the way. Riki and her daughter Juliana fought their battles together. Riki was pregnant with Juliana when she was diagnosed with breast cancer. Juliana was born with a malformed heart and spent the first weeks of her life battling against incredible odds. Through treatments, waitlists, surgeries, and recovery, Riki and Juliana now share the connection of life and joy. We thank Riki & Juliana and their family for sharing their story in an effort to promote advocacy, support, and awareness! If you have a story to share, please contact us or visit our stories webpage to submit it! 
Quality Improvement UpdatesDe-Escalation (Discharge) Project The De-Escalation/Discharge Committee Leaders presented the new project focus at the January 27th Leadership Committee meeting. For over a year, we have focused on improving discharge rates for VAD patients. We found that only about 50% of pediatric patients with CF-VADs are discharged from the hospital. We also found that 1/3 of VAD patients undergo transplant prior to discharge from the hospital. The scope of our project has now expanded to better understand factors influencing transplant listing, specifically de-escalation of care. Our eventual goal is to establish guidance on optimal timing for transplant for various populations to improve post-transplant outcomes. 19 teams signed up to participate in this project will use the newly revised ACTION Flight Plan tool & patient/caregiver journey maps. This project is open to all sites in ACTION. If you missed the deadline but would like to participate in the new project scope, please email us to let us know! We will officially kick-off the new project during our committee call on March 2nd. Stroke ProjectThe next discussion meeting will be held on March 3rd. We are reaching out to sites that have submitted stroke events to schedule them for upcoming clinical discussion meetings. By reviewing each individual stroke event we hope to reduce stroke rates even further for VAD patients. Please continue joining us for our stroke meetings the first Thursday of each month from 4:30–5:30 pm ET. Please email us with any questions! Medication Titration Project The project focus around optimizing and uptitrating medicines for heart failure patients is underway. Baseline data collection ended in October and intervention planning will begin early 2022. The Meds Titration committee will use the baseline data and pilot testing to inform and create an ACTION recommended protocol. Heart Failure Project Teams continue to test the two interventions: a communication checklist and a discharge plan. We are aiming to reduce length of stay for heart failure patients admitted to the hospital, as well as decrease readmissions. The next meeting will be on March 29th. Please continue to enter data into the enrollment REDCap for all heart failure patients, not only patients that have used the interventions. Please see the NEW Heart Failure Data Entry infographic to know when and where to enter data for this project. 
Registry Database UpdatesSimplified Clinical data as of 2/2/22 Total # VAD Patients Enrolled 839 DMD Initial Enrollment: 69 6-mo follow-up completed: 6 CardioMEMs Initial Enrollment: 4 6-mo follow-up completed: 2 Fontan Initial Enrollment: 79 30-day follow-up completed: 70 Open Positions in ACTION Centers
The Hospital for Sick Children |
An Introduction to Myocarditis
March 20, 2024
