Dear Community,
ACTION continues to collaborate and produce during this pandemic. We appreciate everyone’s continued efforts and look forward to rolling out some large projects that have been in the works, such as additional education materials and an online education platform for patients/families (and providers to follow afterward).
This past month, we successfully rolled out our Fontan Referral Tracking project and are already collecting referral data. We also continued strategizing for our next stroke reduction project, which will also focus on reducing bleeding rates. Lastly, we finalized plans and materials for the ACTION-PHTS Telehealth Project kick-off, which is slated for August 10th.
On August 13th, we are very excited to host the third webinar in our new virtual series of ACTION Learning Sessions. Rob Niebler, MD, and Matthew Zinn, DO, will be discussing the critical topic of Right Heart Failure and Biventricular Support Options. More details and registration info below.
As always, stay healthy and well!
Regards,
Right Heart Failure and Biventricular Support Options
Thursday, August 13, 2020
4–5 PM ET
Speaker:
Rob Niebler, MD – Children’s Hospital of Wisconsin
Matthew Zinn, DO – Children’s Hospital of Pittsburgh
Moderator:
Kathleen Simpson, MD – University of Colorado
Make sure to submit a question or topic you want to discuss during our learning session. Please submit it on the event registration page.
________
Expert Panel and Discussants:
Sabrina Law, MD – Morgan Stanley Children’s Hospital of New York Presbyterian
David Morales, MD – Cincinnati Children’s Hospital Medical Center
Iki Adachi, MD – Texas Children’s Hospital
Robert Jake Jaquiss, MD – UT Southwestern Medical Center
And YOU!
Please register by August 10, 2020. Registration is free and open to anyone interested in participating. To join us, click below:
— New Video —
The McQueen Family & Waitlist Outcomes
ACTION has been working to improve transplant waitlist survival and outcomes for children with cardiomyopathy like Dylan McQueen (featured above) and patients with congenital heart disease. Patients and their families sometimes have to wait years for a heart transplant. ACTION is working to help patients become stronger and healthier while they wait for a life-saving transplant.
This work has especially touched the hearts of the McQueen Family and they are now helping to lead our efforts! Watch their story to learn more.
Newest Centers
Advocate Children's Hospital
Chicago, IL
- Emma Anderson, RN, BSN, CCRN
- Nancy Ghanayem, MD, CICU
- Sarah Kane, MSN, BC-PNP
- Chelsea, Kriesberg, NP
- Kristen Nelson, MD
- Cindy Urbas, Perfusionist
- Kathleen, Williams, RN, BSN
Upcoming Events
August 13, 2020 (4–5 PM Eastern)
ACTION Virtual Learning Session
Right Heart Failure and Biventricular Support Options
More Info | Register
August 18, 2020 (3–5 PM Eastern)
Cardiac Networks United Virtual Conference
Health Disparities in Pediatric & Congenital Cardiology: Understudied & Undervalued
View Agenda | Register
October 4–7, 2020
30th Annual International Symposium on Adult Congenital Heart Disease
(rescheduled from June 2020)
ACTION Happy Hour & Meeting (TBD)
Cincinnati, OH
More Info
Registry Database
Updates
New Fields in Simplified Clinical Database
New field additions have been added to the Simplified Clinical Database to capture Impella-related implant information. You can find the July 2020 version of the Worksheets and User Manual as well as a document summarizing the changes in the “Reference Documents” area of the Simplified Clinical CDP database as well as the “Database Worksheets & User Manual” section of Basecamp.”
Reminder: Database Linkage Form in Simplified Clinical
The database linkage form (in Outcome and Other Reports section) collects IDs for the subject in different databases to allow study outcomes of VAD supported population which is not possible with one database alone. UNOS IDs are particularly important to track wait list and post-transplant outcomes.
Please identify waitlist ID (WL IDs) from your UNet sites as shown in the image below.
Please note that UNOS donor IDs, center’s tracking IDs or encrypted waitlist ids etc. are different from waitlist ID (WL ID)
Email us: ACTION.DCC@cchmc.org
Quality Improvement Updates
COVID-19 Calls
Thank you to those who continue to share learnings and experiences on the weekly COVID-19 calls with ACTION and PHTS! These calls are now bi-weekly, with the next call on August 27, 2020.
Discharge Committee
The next Discharge Committee meeting will take place on August 5, 2020 where we will here from the Stollery team and review updated data. Please continue to test the Flight Plan and Journey Map, and enter data in REDCap on any patients who have been discharged.
Stroke QI Project
Excitingly, ACTION’s early QI efforts to reduce strokes in VAD patients is showing improved outcomes! The graph below shows a reduction in strokes compared to the baseline period from Pedimacs. We believe that we can drive down strokes even further and are working on re-launching ABCs 2.0 in a few months. ABCs 2.0 will also include reducing bleeding events. Please continue to enter data into REDCap for your VAD patients in the meantime.
The QI charts for specific measures are also now being shared for sites to examine their own data compared to rest of the network, such as the chart below that was recently shared with site PI’s.
Telehealth Project
The telehealth QI project team continues its design work with plans to launch the project on August 10th with the 24 participating teams who have volunteered. Initially, testing and learning will be done around defining which patients qualify for virtual visits and making education materials for care teams and patients/families. Thanks to the teams for completing the baseline data survey, as well!
