We are looking forward to seeing many of you at ISHLT in April! If you haven't already, please RSVP for the ACTION meeting on Tuesday, 4/26 from 3–6pm ET. The meeting is open to all ACTION members attending ISHLT. In other exciting news, we are getting ready to launch the Berlin Heart Active Driver study! Communications have been sent out to 17 ACTION sites participating in this device trial, and study packets
will follow soon. Collaboration and moving the field forward together is one of ACTION's main principles, and this important trial will be the first of its kind for our network. Regards,
April 15, 2022
ACTION Member of the Month
Submissions for April due
April 26, 2022 | 3 – 6 PM ET
ACTION Meeting at ISHLT
Hynes Convention Center, Level 3, Room 312
Boston, MA
RSVP Now - We can't wait to see you!
ACTION @ ISHLT: Look Who’s Talking
Thursday, April 28th9:45–10 AM Sebastian Tume “Characteristics and outcomes of patients supported with Impella percutaneous VAD device at pediatric institutions: Action collaborative Experience, Sebastian Tume, et al.” 5:27–5:33 PM Justin Godown “A Novel Approach To Pediatric Heart Failure Quality Improvement Within The ACTION Network, Justin Godown, et al.” Friday, April 29th8:15–8:30 AM Neha Bansal “The Initial Analysis of Infectious Adverse Events in Pediatric Ventricular Assist Devices Reported to the ACTION Registry, Neha Bansal et al.” 1:30–1:45 PM Sharon Chen “Outcomes After Initial Heart Failure Consultation In Fontan Patients, Sharon Chen et al.” 5–6 PM |
Poster Sessions - Neha Bansal “Reducing Donor Acceptance Practice Variation – Learnings from a Discussion Forum, Neha Bansal et al.”
- John Dykes “Inter-Rater Reliability of Total Cardiac Volume Measurement for Heart Transplantation: An Action Collaborative Study, John Dykes et al.”
- Jacqueline Lee “Outcomes of Intracorporeal Continuous, Paracorporeal Continuous, and Paracorporeal Pulsatile
Ventricular Assist Devices in Pediatric Patients 10-30 kg, Jacqueline Lee, et al.
- Deepa Mokshagundam “Ventricular Assist Device in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Analysis, Deepa Mokshagundam, et al.”
- Kathleen Simpson “Feasibility of Implementation of a Heart Failure Communication Checklist in the Multi-Center Action Network, Kathleen Simpson et al.”
We are excited to share that over 1,000 devices have been entered into our VAD Registry!
This milestone would not be possible without your efforts and collaboration. Data from these devices is used for quality improvement, labeling applications, as well as abstracts and manuscripts. The continuation of this data collection will help improve outcomes for all pediatric and ACHD patients affected by heart failure. Thank you!
Farhan Zafar, MD, MSCincinnati Children’s
WHAT MADE YOU WANT TO JOIN ACTION? WHAT IS YOUR FAVORITE ACTION MEMORY?
It’s hard to point to one, but my favorite memories have always been the moments when I heard stories from patients/families and the impact ACTION is having on the maturation of the field. The optimism that working together will make the difference made me join ACTION. WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION?
Wearables project and TRACTION (trials in ACTION) are the ones I am most excited about. WHERE IS YOUR FAVORITE TRAVEL DESTINATION?
There are still many places on my list to explore, but for now it’s the island of Hawai’I (the Big Island), Hawaii. It is my favorite because it presents many different landscapes and climates in a relatively small piece of land, which gives me a unique perspective on life every time I am there, plus Hapuna beach on the island is the best beach I have ever been to. WHAT IS YOUR FAVORITE BOOK?
“How full is your bucket” by Tom Rath and Don Clifton. It gave me a new meaning of give and take in every interaction, some fill your bucket and some dip from it, chose it appropriately. WHAT’S ONE THING THAT OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU?
I am known for my culinary skills in my close circle and can make some delicate kabobs and desserts.
Nora Hammond, MSN, APRN, CPNP-ACAnn & Robert H. Lurie Children's Hospital of Chicago
WHAT MADE YOU WANT TO JOIN ACTION?
I wanted to join ACTION after I saw the huge effect made by some of the committees that my good friend, Allison Reichhold, sat on! She was able to help create, share, and implement so many new things for our center from this community, and the impact is definitely motivating. WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION?
I’m currently super excited about the iDECIDE tool—we’ve used it now on 2 families and it definitely helped to guide discussions. I think the tool really helped to open conversations between the family member and even more so our patients. WHERE IS YOUR FAVORITE TRAVEL DESTINATION?
Anywhere in Mexico! Even though it’s not good for me, I love the sun. WHAT IS YOUR FAVORITE BOOK?
“When You Are Engulfed in Flames” by David Sedaris; he always makes me laugh so hard. WHAT’S ONE THING THAT OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU?
I love daytime court television and am in the background of a handful of Judge Mathis episodes.
Svetlana Shugh, MD, FAAPJoe DiMaggio Children’s Hospital
WHAT IS YOUR FAVORITE ACTION MEMORY? OR WHAT MADE YOU WANT TO JOIN ACTION?
The idea of pooling together experiences, sharing questions, and working towards improving care for patients and their families in a meaningful and tangible way was amazing. I wanted to contribute to this mission and learn from the community. I first experienced ACTION when I was at Cincinnati Children's, and wanted to continue involvement after I transitioned to Joe DiMaggio. WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION?
I am most passionate about standardizing and improving all aspects of care for our VAD patients, as well as growing the focus on improving overall care for patients with Duchenne Muscular Dystrophy. WHERE IS YOUR FAVORITE TRAVEL DESTINATION?Anywhere there’s a sandy beach and I may not get cell service – it’s hard to find time to disconnect from all there is going on! WHAT IS YOUR FAVORITE BOOK?
Looking for suggestions! WHAT’S ONE THING THAT OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU?
I did rhythmic gymnastics (yes, with the ribbon, ball, clubs, hoop, etc) when I was younger, and then transitioned to danceline which I continued through college.
Quality Improvement Updates
De-Escalation (Discharge) Project 19 teams are testing the newly revised ACTION Flight Plan tool & patient/caregiver journey maps. 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. We will have a round-robin report out from our teams during our committee call on April 6th. Stroke ProjectThe next discussion meeting will be held on April 7th. 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. In March, pilot sites began prospective data collection and testing the intervention worksheets. The Meds Titration committee will use the data and testing to inform and create an ACTION recommended protocol. Download the Outpatient Medication Titration Recommendation tool, and use it as a reference during titrations. TIP: Print it out double sided and laminate to keep with providers! Heart Failure Project The Heart Failure committee’s leadership is developing a more efficient and impactful plan for the existing HF data entry and quality improvement initiatives. The proposed plan will be presented and discussed at the in-person ACTION meeting (@ISHLT) on April 26th and details
will be distributed via email. If you are attending the ACTION Meeting at ISHLT and have not yet RSVP’d, please do so here. The next virtual HF committee meeting will be on May 31st.
Registry Database Updates
— NEW! —
Change to ACTION QI ID Format You will notice a few minor changes to the data entry format for the ACTION QI ID next time you enroll a patient for our QI projects. This new data collection format will help us with data cleaning and accuracy. Email action.dcc@cchmc.org with any questions. Projects affected include:
HF Communication Checklist Completed
HF Discharge Plan
Prospective Medication Titration Data Entry
DMD
ABCD’s of Reducing Stroke 2.0 ACTION QI
De-Escalation Flight Plan (A-C-T)
CardioMEMs
Simplified Clinical data as of 3/4/22
Total # VAD Patients Enrolled
DMD Initial Enrollment: 76 6-mo
follow-up completed: 8
CardioMEMs Initial Enrollment: 4 30-day
follow-up completed: 2 6-mo follow-up completed: 0
Fontan Initial Enrollment: 79 30-day follow-up completed: 70
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
UT Health San Antonio, Joe R. and Teresa Lozano Long School of Medicine
San Antonio, TexasLooking for: Pediatric Heart Transplant and Heart Failure Cardiologist
(Full-time medical director of pediatric heart failure, transplant and mechanical circulatory support to develop a pediatric heart failure and heart transplant program.)
Responsibilities: The ideal candidate would have experience in pediatric heart failure and transplant and the desire to build and grow a heart failure program. The position encompasses responsibilities in patient care including heart failure, pre- and post-transplant and VAD patients, all forms of mechanical circulatory support and ECMO and will work closely with the University Health Transplant Institute. Preference will be given applicants qualified to serve as an Organ Procurement and Transplant Network Primary Pediatric Heart Transplant Physician. To Apply: To learn more and apply, see the full job posting. Requisition ID 22000298.
Email Contact: Ginnie Abarbanell, MD, Professor & Chief, Division of Pediatric Cardiology
Hassenfeld Children’s Hospital - NYU
New York, NYLooking for: Pediatric Heart Failure/Transplant Cardiologist
Responsibilities: We are seeking a pediatric heart failure/transplant cardiologist for a full-time academic faculty position in the Department of Pediatrics at NYU Grossman School of Medicine and Hassenfeld Children’s Hospital at NYU Langone Health. The successful candidate will be joining our growing Pediatric Heart Failure and Transplant Program and be responsible for providing comprehensive clinical services, education, research and programmatic development in conjunction with the current Medical Director and transplant nurse practitioner coordinator (https://nyulangone.org/locations/pediatric-heart-failure-transplant-program). To Apply: Interested candidates are encouraged to submit their curriculum vitae by email to Rakesh Singh, MD, MS, Medical Director, Pediatric Heart Failure and Transplant Program.
Email Contact: Rakesh Singh, MD, MS, Associate Professor (Clinical) of Pediatrics, NYU Grossman School of Medicine; Medical Director, Heart Failure, VAD & Transplantation Program
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