Dear Community,
We hope you have all had a happy, safe and COVID-free holiday! The greatest gift of the year has now arrived to hospitals and medical centers all over the country. With vaccinations officially under way, we are hopeful and optimistic for our future. We are with you all as we progress onward in this crisis.
Strategic planning for 2021 is also under way, and we will aim to continue many of our current projects and initiatives, while starting some new endeavors, as well.
Stay safe and healthy,
Exciting News!
The FDA has updated Abbott’s HeartMate 3™ LVAD labeling to treat children with heart failure.
We got it done! ACTION's real-world data accelerated the approval process by demonstrating that this device is safe and effective for use in children.
Thursday, January 14, 2021
4:00 PM Eastern
Moderator
Neha Bansal, MD
Children's Hospital at Montefiore
Featured Presentations
A Change
of Heart
Alin Gragossian DO, MPH
Emergency Medicine/Critical Care Physician and Heart Transplant Recipient
A Parent's Experience
Melissa McQueen
Parent/Founder of Transplant Families
Living with
a VAD
Angelica Sanchez
19-year old patient with heart failure
ACTION’s Patient Reported Outcomes Project
Betsy Blume, MD
Boston Children’s Hospital
Melissa Cousino, PhD
C.S. Mott Children’s Hospital
Lindsay May, MD
Primary Children’s Hospital
________
Please register by January 13, 2021. Registration is free and open to anyone interested in participating. To join us, click below:
Check it out!
Matt O’Connor, MD (CHOP)
ACTION Academic Oversight Introduction
As ACTION continues to grow and evolve, new needs emerge. In particular, we needed to form a consistent presence for ACTION in the academic sphere. We are very pleased to announce that our own Matthew O’Connor, MD (CHOP) has agreed to take on the responsibility of leading this new section of ACTION.
Responsibilities in this area include promoting mentorship of junior faculty; balancing the volume and timing of projects throughout the year, including abstract submissions, so as to make best use of available resources; and ensuring high quality and timely completion of ACTION manuscripts by working with writing groups to streamline the manuscript process while respecting the priorities above.
Matt brings a wealth of experience to this role, and as you all know, he embodies the collaborative spirit of ACTION. As part of better defining the needs in this area, Matt is planning to meet with as many site PI’s as possible for exploratory conversations. We hope you will make your voice heard and let him know what you see as our most pressing needs in academic work. Please join us in welcoming Matt to this new role.
New ACTION Publication
ABCs of Stroke Prevention: Improving Stroke Outcomes in Children Supported With a Ventricular Assist Device in a Quality Improvement Network
by Chet Villa, et. Al.
New ACTION Organizational Structure
ACTION has released a new organizational structure, which can be downloaded on Basecamp or from myactioneducation.org via the About ACTION page. As always, please email us to get involved!
Help Us Welcome Our Newest Data Management Specialist, Karina Tabar!
From Karina...
I joined the CCHMC family 3 ½ years ago as a data management specialist for the internal analyst team within the Anderson Center. Some of my main responsibilities on the team was to lead the measure catalog, continue routine reporting, update charts for projects, work within REDCap, and help the analyst team manage their data. Some of the customer teams I was a part of was the Sepsis Collaborative, Perinatal Institute, Sickle Cell, CBDI Bathing, Pressure Injuries and many others. I learned how to keep multiple data sets for different projects organized, SQL coding, annotations within charts based off interventions, and how to work within REDCap databases.
I am excited to join the ACTION Learning Network team and look forward to using my experience on my new team. I hope to help them in any way I can and help keep the team’s goals on track to help the patients in the end.
New Protocols Available
The Duchenne’s Muscular Dystrophy (DMD) Committee released a new protocol for ACTION centers, in collaboration with the Harmonization Committee. The protocol was developed to provide centers with guidance on heart failure medication therapies for DMD patients. The Harmonization Committee also finalized the Pediatric VAD Patient & Device Selection protocol.
Protocols are available on Basecamp:
Non-PHI Discussion & Clinician Files > Docs & Files > Harmonized Protocols & Guidelines
Feedback or suggested edits for these documents? Email: Lauren Smyth
Upcoming Events
January 14, 2021
Learning Session — (VIRTUAL)
Living with Heart Failure
More Info | Register
February 11, 2021
Learning Session — (VIRTUAL)
HVAD Outcomes in the New Era
More info and Registration details to come
March 11, 2021
Learning Session — (VIRTUAL)
HeartMate 3™ LVAD Outcomes in the New Era
More info and Registration details to come
Quality Improvement Updates
Discharge Project
During the last Discharge Committee meeting, Andrea Maurich and Aamir Jeewa presented The Hospital for Sick Children’s success with transferring Berlin patients to the floor and discharging HM3/HVAD patients. The next Discharge Committee meeting will take place on January 6, 2021. We will share updated process and outcome data, and continue to discuss the use of VAD education materials as a potential next intervention to test to improve discharge rates. Please continue to test the Flight Plan and Journey Map, and enter data into REDCap on any patients who have been discharged or transferred to the floor.
Stroke Project
We believe that we can drive down strokes even further and are working on re-launching ABCs 2.0 soon. During ACTION’s fall meeting there was encouraging discussion around how we can use real time data and an M&M-type of sharing forum to learn from past strokes to make improvements. Stay tuned for more details coming in the next few months! Additionally, the REDCap fields have been revamped to make it easier and faster to enter data. Please continue to enter data into REDCap for your VAD patients for the first 8 weeks of implant.
Telehealth Project
Recently, the focus of this project has shifted from increasing the number of telehealth visits to increasing the quality of visits. Teams continued to learn how to use the sFMEA tool to identify barriers during the telehealth process, and Melanie Sojka presented Lurie Children’s Hospital of Chicago telehealth process, barriers, and improvement opportunities. Teams also learned about Lurie Children’s use of telehealth appointments for post-biopsy follow-up visits for heart transplant patients. Intervention testing of the algorithm around defining which patients qualify for virtual visits and sharing education materials for care teams and patients/families continue, as well. The next huddle is on January 13, 2021. Please continue to enter your data into REDCap for the providerand patient surveys.
Heart Failure Project
Thank you to the 20+ teams who have signed up to participate in the upcoming heart failure project. Teams will be testing a checklist and discharge plan to reduce length of stay and readmissions. More details for the official project launch are coming soon!
Registry Database
Updates
Impella Collaboration & Retrospective Data Entry
ACTION is proud to announce a new collaboration. Working together with Abiomed, we are collecting data to be used for submission to the FDA for pediatric labeling of the Impella. This will entail retrospective data collection of Impella key outcomes over the past few years. This effort will be led by Dr. Sebastian Tume, will commence in January and is open to all ACTION centers (but is completely voluntary, and will only be relevant for those sites with Impella experience). If you are interested in participating or learning more, please contact Christy Larkins.
Retrospective Data Entry in ACTION
Please see this document for a streamlined version of data entry that can be done for patients treated prior to your site enrollment into ACTION (retrospective data). This is voluntary, by site. Some sites might choose to do this in order to have access to the full range of analytics provided by the ACTION site-level reports. This can help with site dashboards, and as baseline data for internal benchmarking and QI. If you are interested in doing this, have a look at the retrospective CRFs – they are very much reduced from the prospective data entry, and (nearly) everything can be found in the Pedimacs dataset, if you have already enrolled your patient there.
