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!
March 24–25, 2022
Utah Cardiac Recovery Symposium (U-CARS) 2022 — (VIRTUAL)
2–9 PM ET (12–7 PM MT)
More Info | Register Now for FREE!
On behalf of the U-CARS Organizing Committee all active ACTION members may attend for FREE. Register Now using the “Media Representatives or VIP guests” option.
April 26, 2022
ACTION Meeting at ISHLT
Hynes Convention Center, Level 3, Room 312
Boston, MA | 3 – 6 PM ET
Children's of Mississippi
- Bibhuti Das, MD
- Stephanie Ghaleb, MD
- Dean Henderson
- Ashley Hilsabeck, CCRN, BSN
- Alicon Johnson, APRN
- Steele Lee, RN
- Brenett Lyles, RN
- Necole Whatley, RN
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.
Nominations will be due by the 15th of each month moving forward.
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.
ACTION @ ISHLT: Look Who’s Talking
Thurs. April 28th, 9:45–10 am | Sebastian Tume, MD: "Characteristics and outcomes of patients supported with Impella percutaneous VAD device at pediatric institutions: Action collaborative Experience, Sebastian Tume, et al.”
Thurs. April 28th, 5:27–5:33 pm | Justin Godown, MD: "A Novel Approach To Pediatric Heart Failure Quality Improvement Within The ACTION Network, Justin Godown, et al."
Fri. April 29th, 8:15-8:30 am | Neha Bansal, MD: " The Initial Analysis of Infectious Adverse Events in Pediatric Ventricular Assist Devices Reported to the ACTION Registry, Neha Bansal et al.”
Fri. April 29th, 1:15–2:45 pm | Sharon Chen, MD: "Outcomes After Initial Heart Failure Consultation In Fontan Patients, Sharon Chen et al."
Fri. April 29th, 5–6 pm | Neha Bansal,
MD: "Reducing Donor Acceptance Practice Variation – Learnings from a Discussion Forum, Neha Bansal et al.”
Fri. April 29th, 5–6 pm | John Dykes, MD: "Inter-Rater Reliability of Total Cardiac Volume Measurement for Heart Transplantation: An Action Collaborative Study, John Dykes et al."
April 29th, 5–6 pm | Jacqueline Lee, MD: "Outcomes of Intracorporeal Continuous, Paracorporeal Continuous, and Paracorporeal Pulsatile Ventricular Assist Devices in Pediatric Patients 10-30 kg, Jacqueline Lee, et al.”
Fri. April 29th, 5–6 pm | Deepa
Mokshagundam: "Ventricular Assist Device in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Analysis, Deepa Mokshagundam, et al."
Fri. April 29th, 5–6 pm | Kathleen Simpson, MD: "Feasibility of Implementation of a Heart Failure Communication Checklist in the Multi-Center Action Network, Kathleen Simpson et al.”
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 Updates
De-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.
The 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 Updates
Simplified Clinical data as of 2/2/22
Total # VAD Patients Enrolled
30-day follow-up completed:
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
The Hospital for Sick Children
Toronto, Ontario, Canada
Looking for: Paediatric Heart Function and Cardiac Transplant Cardiologist
Responsibilities: The primary role of the Heart Function and Transplant cardiologist includes the care of patients with cardiomyopathies, heart failure, transplant, CHD, and VADs. The successful candidate would also be expected to conduct academic work and/or quality improvement, depending on their areas of interest.
Candidates must be eligible for licensure with the College of Physicians and Surgeons of Ontario and eligible for an academic appointment at the University of Toronto. Rank and salary based on qualifications and experience.
To Apply: To learn more and apply, see the full job posting.
Email Contact: Dr. Mike Seed, Head, Division of Cardiology, Department of Paediatrics,
The Hospital for Sick Children, 555 University Ave. Toronto, ON Canada, M5G 1X8
Children’s Healthcare of Atlanta
Looking for: VAD RN Clinical Nurse Coordinator
Responsibilities: The Ventricular Assist Device (VAD) Nurse Coordinators are specialized registered nurses, in an ambulatory and inpatient care setting, that facilitates the care and education of VAD patients and their families. From initial contact, through the evaluation for VAD implant, during the pre-operative, peri-operative, and post-operative periods as well as continual outpatient follow-up. The VAD Nurse Coordinator ensures continuity of care across the VAD/Heart Transplant continuum.
To Apply: To learn more and apply, see the full job
Email Contact: Diane Long, CPNP AC/PC; Lead APP Advanced Cardiac Therapies
Children's Hospital of Philadelphia
Looking for: VAD Program NP Coordinator
Responsibilities: CHOP is seeking an NP for the position of VAD Coordinator for our pediatric VAD Program. CHOP is a high-volume, high-acuity VAD program implanting multiple device types in children and is seeking a dynamic, creative, and collaborative individual for this position. The position will entail oversight of inpatient and outpatient VAD implants, program development, quality improvement, research, and participation in ACTION. The VAD Coordinator will work closely with the program's medical and surgical leadership to provide optimal outcomes and innovate in patient care.
To Apply: To learn more and apply, see the full job posting.
Email Contact: Matthew O'Connor, MD