Dear ACTION Community,
Our hearts are with you as we all deal with the current COVID-19 crisis. ACTION is committed to providing a collaborative platform to share learnings and experiences, and to support each other, in this challenging time. We are partnering with PHTS and other organizations to streamline and consolidate communication. We are developing patient-facing education materials to help reduce the labor of each site generating their own materials. We will be launching a weekly COVID-19 huddle to share experience and provide support, and are enhancing Basecamp to serve as a respository for useful resources and key publications.
We are grateful to all of your contributions to this process. We have discussed with many of you, what is the best role for ACTION in this difficult time. Not surprisingly, we are all in somewhat different circumstances and there is no single response to this question. We have therefore decided to continue with normal ACTION activity, in addition to the COVID-19 work described above. However, we will not deploy any new initiatives in the near future. We understand that some sites or individuals may not be able to continue their prior level of engagement with ACTION until the current crisis abates, while others may have extra time to contribute. Please be assured that if you need to scale back on your participation, you should feel free to do so, and when matters are more normal, we will assist you in resuming your full participation in the ACTION learning network.
Take extra care and stay healthy!
Visit our new COVID-19 page for a full list of informational resources to share with your patients and families.
——— S P O T L I G H T O N ———
ACTION Leader: David Peng, MD
LOCATION: University of Michigan
POSITION: Director of Pediatric Heart Failure and Mechanical Circulatory Support, 3 years
ACTION ROLE: Stakeholders & Innovation Co-chair, Leader of the Practice Harmonization Committee
What inspired you to join ACTION?
Our patients/families deserve every shot at living longer, stronger, healthier and better lives. Caring for children with heart failure is extremely challenging. I realized I could not get better alone and that I desperately need lots of help and collaboration. Thankfully, we formed ACTION to all work together, share best practices and improve outcomes!
What is the scope of your job?
I oversee the care of children with heart failure, ventricular assist devices and heart transplants. I try to make sure their care, medications and devices are optimized so that they can feel better.
What is most rewarding about your job?
Personally witnessing and caring for children who miraculously recover from life-threatening conditions and return to happy, fulfilling lives outside of the hospital makes everything we do worth it!
What keeps you up at night?
My patients that are not feeling well.
How do your patients impact your life?
My patients never cease to amaze, challenge and inspire me.
If you could miraculously produce one innovation that would affect patient's care/outcomes, what would it be?
A safe, permanent total artificial heart.
Best resource for families:
https://dev.childrenscardiomyopathy.org
Favorite hobby: Playing basketball with my boys
Favorite food: Dumplings
Due to COVID-19 concerns, the following events have been cancelled: Cancelled EventsApril 2020 (CANCELLED) May 13–15, 2020 (CANCELLED) Upcoming EventsJune 10, 2020 (NOW VIRTUAL) June 11–13, 2020 September 24, 2020 September 25–26, 2020 |
Newest CentersChildren’s Hospital of Richmond
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Please share these new ACTION items!
Thank you for your continued support and efforts!
VAD Controller Change-out Game
We just published the VAD controller change-out video game to the Apple App store!
This game is currently modeled for a controller change-out scenario for the HeartMate 3 VAD, but we have been interested in making other alarm scenarios in the future, as well. This game is meant to be introduced to patients, caregivers, and staff after they have already received hands-on training from a VAD Coordinator/VAD Educator. It is meant as a supplemental or refresher practice tool to perform controller change-outs in a safe, virtual environment.
On your Apple devices, please go to the App store and search for “VAD-Venture.”
MCS in ACHD Patients Infographic
This infographic explains the benefits of VAD & TAH support in ACHD patients. It is meant for patients, families and caregivers.
Timing to release this infographic is perfect as SynCardia just announced the approval of the 50cc pump! Exciting news for our community and smaller patients.
Thanks to Ari Cedars, MD, & the ACTION ACHD/HF Awareness & Fontan Committee for putting this together.
Download the pdf. The infographic pdf also lives on the "Family Resources" page of the ACTION website, located here.
Registry Database
Updates
With the current COVID-19 pandemic, to identify any potential MCS patients diagnosed with this infection, please use already existing AE option of “Respiratory Failure requiring re-intubation” or newly added AE option “Other respiratory failure not requiring re-intubation” and complete item #12 on AE form.
In partnership with PHTS, we are also reviewing additional data fields to collect on these patients and may be starting a redcap database, if needed.
NOTE: Please continue to consent patients for ACTION and continue data entry. COVID-19 is not affecting our ACTION protocol or enrollment process.
Email us: ACTION.DCC@cchmc.org
Quality
Improvement
Updates
In the midst of COVID-19, QI work may look a little different to you and your teams.
While we are still encouraging teams to continue testing the ABC bundle and Discharge interventions, use this time to develop best practices and processes for handling COVID-19 patients.
What can you test and improve upon now to get ready? We’ll be meeting weekly to share best practices and learnings from all the teams.
Please come ready to share!
Open Positions in ACTION Centers
UCSF Medical Center/ UCSF Benioff Children's Hospital
San Francisco, CA (Mission Bay)
Looking for: Nurse Care Coordinator for Pediatric Heart Failure, Transplant, and VAD to assess, plan, coordinate, implement and evaluate patient care within the ambulatory and inpatient settings. Must be highly skilled with an in-depth knowledge and understanding of pediatric heart failure, heart transplant, and ventricular assist devices (VAD).
Responsibilities include: AMBULATORY: Coordinate outpatient services, telephone triage patient symptoms, coordinate patient evaluations, assist with insurance authorizations, contact home health companies, assure supply stock, assist with medication refill requests, line and tube care, patient teaching, etc.. INPATIENT: Assist with patient/family education, complex care coordination– including comprehensive VAD care and management.
To Apply: For the full job description, click here.
Email Contact: Maria Fe S. Partible, BSN
Manager, Pediatric Heart Failure, Transplant & VAD
University of California San Francisco Benioff Children’s Hospital
