Dear Community,
We hope you have all had a happy, safe and COVID-free Thanksgiving! As we have all learned this year, reflection and giving thanks are more important now than ever. We recognize the COVID-19 pandemic continues to be a challenge for everyone, not just in our community, but around the world. Our hearts are with you as we all continue to grapple with the current crisis. We are thankful and grateful for all of your contributions to continue ACTION’s work, and we look forward to continuing to work together and to support each other.
Our community has experienced an enormous loss this year, with the untimely death of Patti Massicotte. We hope you will join us on December 4th to honor and commemorate our friend and colleague. Details are below to register and join in the celebration of her life. We are also collecting stories and pictures to share – please email them. We hope to see you there with a holiday drink in hand for a toast to Patti’s beautiful life!
Stay safe and healthy,
Check out our upcoming
co-sponsored webinar!
Mechanical Circulatory Support Strategies for Interstage Single Ventricle Patients
Thursday, December 10, 2020
4:00 PM Eastern
________
Moderator
David Sutcliffe, MD
University of Texas Southwestern Medical Center, Children’s Health
Make sure to submit a question or topic you want to discuss during the webinar on the event registration page.
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Featured Speakers
Why do some interstage single-ventricle patients develop severe heart failure?
Kiona Allen, MD
Ann & Robert H. Lurie Children's Hospital
ACTION outcomes of interstage single-ventricle patients implanted with VADs
Anna Joong, MD
Ann & Robert H. Lurie Children's Hospital
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Featured Debate
In an infant with hypoplastic left heart s/p Norwood/BT shunt with severe, progressive ventricular dysfunction and heart failure, should a continuous or pulsatile VAD be used?
Francis Fynn-Thompson, MD
Boston Children’s Hospital
Mark Bleiweis, MD
UF Health Shands Children’s Hospital
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Expert Panel & Discussants
David Brown, MD
Boston Children’s Hospital
Nancy Ghanayem, MD
Advocate Children's Hospital
Aamir Jeewa, MD
The Hospital for Sick Children
Mary Mehegan, RN
St. Louis Children’s Hospital
And YOU!
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Please register by December 9, 2020.
Registration is free and open to anyone interested in participating.
To join us, click below:
Join us for a tribute to
Dr. Patti Massicotte!
Mary Patricia “Patti” Massicotte, MD, FRCP has had a monumental impact on our field of medicine and our lives.
During this holiday season let's take a moment to come together (virtually) and celebrate the amazing life, work and impact of Patti.
Friday, December 4th | 7–8 PM ET (via Zoom)
Speakers
Robert Jaquiss, MD
Division Director of Pediatric and Congenital Cardiothoracic Surgery and Co-Director of The Heart Center at Children’s Health in Dallas
Paul Monagle, MD
Assistant Dean and Head of Department of Pediatrics,
The University of Melbourne
Mary Bauman
Nurse Practitioner, Alberta Health Services
Share Your Memories
Please share your favorite memories of Patti with us. Send an email with any stories, comments, photos, etc. to info@actionlearningnetwork.org.
Register
Register now to receive the Zoom link.
Then, on Friday, December 4th, make yourself a drink and join us for this virtual holiday cocktail hour tribute. We can't wait to see you and wish you a happy holidays!
Check it out!
ACTION recently launched an online learning website: myactioneducation.org. The initial public facing site is focused on providing education to patients, families and caregivers. The site covers heart failure and VAD education topics such as understanding your diagnosis, medicine treatment options and maintaining your health and wellness. A provider facing section of the site is coming soon!
A Knowing Your Device and Understanding Surgery section of the site is also underway. The extensive education being curated for these topics is quite in-depth, and we will be restricting general public facing access to this section. In order to view this content, users will need to request access and create a free login. Each ACTION site will have a unique URL to provide their patients/caregivers and providers in order to sign up for access. Users can also send a direct request for access to their ACTION center through the website.
If you haven’t already done so, please email us the designated contact(s) at your site whom will be responsible for access requests (most likely your VAD Coordinator). Before we launch this “Devices and Surgery” section of the educational site, we will send out detailed instructions for how to approve and distribute access. We hope to launch this in the next few weeks!
Donor Decision Forum
The Donor Decision Forum (previously the Donor Decision Project) is changing to a new recurring date and time! These educational donor forum calls will now take place on the 3rd Thursday of each month, from 4:30–5:30pm ET, beginning on 12/17/20.
If you were already a member of this group previously, we will be sure to include you in the new Zoom/calendar invitation to go out soon. If you are interested in joining this group, please email by 12/8/20 to be added to the new series.
All clinical members of ACTION and PHTS are welcome to join this forum. We also encourage our colleagues to present cases during this forum.
New ACTION Publications!
Heart failure in children: Priorities and approach of the ACTION collaborative
by Neha Bansal, et. Al.
Check out the publication here.
Discharge and Readmissions After Ventricular Assist Device Placement in the US Pediatric Hospitals: A Collaboration in ACTION
by David Bearl, et. Al.
Check out the publication here.
New Protocols Available
The Anticoagulation Committee released two new protocols for ACTION sites, in collaboration with the Harmonization Committee. The protocols were developed to provide centers with guidance on Anti-Platelet Strategies & Pathways, as well as a revised DTI/Bivalirudin 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
Our Newest Members of ACTION
Congratulations to our quality improvement consultant, Paige Krack & her family, on their newest addition and bundle of joy, Theodore Raymond! Paige and Theo are doing great!
Congratulations to our Data Coordinating Center Developer, Kyle Werling & family, on their newest addition and bundle of joy, Silas Gabriel! Silas and family are doing great!
Upcoming Events
December 4, 2020 (7pm ET)
A Tribute to Patti Massicotte
Virtual Tribute
More Info | Register
December 10, 2020 (4–5pm ET)
ACTION & NPC-QIC Webinar
Mechanical Circulatory Support Strategies for Interstage Single Ventricle Patients
More Info | Register
January 14, 2021
Learning Session — (VIRTUAL)
Patient & Family Experience
More info and Registration details to come
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 Committee
During the last Discharge Committee meeting, teams reviewed best practices for using the flight plan. The next Discharge Committee meeting will take place on December 2, 2020. We will share updated process and outcome data as well as learn how The Hospital for Sick Children has been able to discharge patients quickly. 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 QI 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.
Lastly, our data analyst recently looked at our stroke data through the lens of health disparities to assess percent of patients who had a stroke by race and ethnicity (funnel plot below). At this time, we are not seeing any significant disparity among racial and ethnic groups, which is a good sign. We may want to look closer at post-stroke outcomes by race and ethnicity as a next step.
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. Intervention testing of the algorithm around defining which patients qualify for virtual visits and sharing education materials for care teams and patients/families. The next huddle is on December 9, 2020. Please continue to enter your data into REDCap for the provider and 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
November data reports are available and Principal Investigators should be able to access the reports. Please contact action.dcc@cchmc.org for any questions or issues with accessing the report.
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.
