Dear Community,
Summer is winding down but ACTION keeps on rolling. Somehow, despite a year that defies description, the ACTION community continues to find the energy and creativity to move forward with new projects while completing prior work. Here’s what you need to know:
The Fontan Referral Tracking Project is now underway with data collection ongoing. Likewise, the ACTION-PHTS Telehealth Project, which launched in mid-August. ACTION HF work is also deploying, with the PHIS Data Collection Project in pilot phase, and anticipated broader rollout in a few months. And last but most definitely not least, the PROs project is in pilot phase as well, with preliminary data collection underway.
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To help with ongoing education of the VAD community, ACTION has hosted 3 webinars to date:
- Fontan VAD Physiology Project (June 2020)
- Fontan Referral Discussion (July 2020)
- Right Heart Failure and Biventricular Support (August 2020)
The next webinar is scheduled on September 10, 2020 and will address Stage 2 (Glenn) Single Ventricle Mechanical Support Experiences and Strategies. These sessions have been well attended and have generated thoughtful discussion on challenging topics. If you have joined them already, thank you! If not, please consider making the time and inviting colleagues to attend as well.
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Looking ahead, there has been a tremendous amount of background work in readying My ACTION Education, an online learning management system for patient education. We anticipate full deployment of the site in the coming months.
We continue to develop relationships with our industry partners and with FDA, and have also been making strides in publishing some of our great work, including:
- Collaboration and new data in ACTION: a learning health care system to improve pediatric heart failure and ventricular assist device outcomes
- Early experience with the HeartMate 3 continuous-flow ventricular assist device in pediatric patients and patients with congenital heart disease: A multicenter registry analysis
- The Creation of a Pediatric Health Care Learning Network: The ACTION Quality Improvement Collaborative
- The “ABCs of Stroke Prevention:” Improving Stroke Outcomes in Children Supported with a Ventricular Assist Device in a Quality Improvement Network (accepted for publication in Circulation: Cardiovascular Quality and Outcomes for Fall 2020)
Our partnership with PHTS is continuing to mature and we have high hopes for more collaborative projects over the next year.
Thanks to everyone for working together to make this work successful.
Regards,
Stage 2 (Glenn) Single Ventricle Mechanical Support Experiences and Strategies
Thursday, September 10, 2020
4:00 PM Eastern
Speaker & Moderator:
Anna Joong, MD – Ann & Robert H. Lurie Children's Hospital
Make sure to submit a question or topic you want to discuss during our learning session. Please submit it on the event registration page.
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Expert Panel and Discussants:
Shri Deshpande, MD – Children's National Medical Center
Katsuhide Maeda, MD – Stanford Children’s Health and Lucile Packard Children’s Hospital
Lindsay May, MD – Primary Children’s Hospital
Hari Tunuguntla, MD, MPH – Texas Children’s Hospital
And YOU!
Please register by September 7, 2020. Registration is free and open to anyone interested in participating. To join us, click below:
Check it out!
Patient Reported Outcomes
PRO Pilot Group Kickoff
The Patient Reported Outcomes (PRO) Committee officially launched the pilot group testing phase of PRO’s for VAD patients on August 6th, 2020. Comprehensive assessments of patient well-being (physical, social, and psychological) can help guide clinical care in both the short- and long-term.
Given that there is no “gold standard” single assessment tool for young people on VAD support, ACTION will be using a combination of tools to pilot their administration and evaluate the quality of the information they provide for our patients.
Pilot centers testing the PRO’s include: Boston Children’s Hospital, Lucile Packard Children’s Hospital at Stanford, Primary Children’s Hospital, UF Health Shands Children’s Hospital, Cincinnati Children’s, and C.S. Mott Children’s Hospital.
The PRO questionnaires/surveys are delivered electronically to patients/families via text and email, and survey results are accessible to clinicians via a web-based dashboard. The testing phase will commence on November 5th, 2020 (3 months), and the electronic PRO’s will be rolled out across the network after the testing phase is complete.
New Protocols Available
The Harmonization Committee released two new protocols for ACTION centers. In collaboration with the Utilization & Value Committee, the protocols were developed to provide centers with guidance on circuit/pump changes for the Berlin Heart and Continuous-Flow VAD’s.
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
September 10, 2020 (4–5 PM Eastern)
ACTION Virtual Learning Session
Stage 2 (Glenn) Single Ventricle Mechanical Support Experiences and Strategies
More Info | Register
September 13–29, 2020
Race For Resilience
Join Enduring Hearts and Big Gifts for Little Lives for a virtual race challenge to celebrate World Heart Day and help support pediatric heart transplant research!
Run, walk or bike by yourself or with a team. #KilometersForKids
More Info
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
November 11, 2020 (2–4:30 PM Eastern)
Cardiac Networks United (CNU) Virtual Conference
Feeding and Nutrition in Pediatric & Congenital Cardiology
More Info | Save the date below – registration coming soon
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 COVID-19 calls with ACTION and PHTS! These calls are now monthly, with the next call on September 24, 2020.
Discharge Committee
The next Discharge Committee meeting will take place on September 2, 2020. 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
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.
Telehealth Project
The telehealth QI project had a successful launch on August 10th! Participating teams will begin testing an algorithm around defining which patients qualify for virtual visits and sharing education materials for care teams and patients/families. The first project huddle took place on August 26th. Please continue to enter your baseline and July 2020 data into REDCap.
MOC
ACTION is now approved for ABP MOC Part 4 credit! The operations team is working on a process to help physicians in ACTION claim MOC credit, and we will be communicating the plans and process soon. Stay tuned!
Open Positions in ACTION Centers
Children’s Medical Center of Dallas
Dallas, Texas
Looking for: 4th Year Fellow in Pediatric Heart Failure and Transplant
Responsibilities: The 4th year fellow will join a team compromising of 5 heart failure/VAD/transplant cardiologists, 4 advanced practice provider, 6 nurse coordinators, psychologists, social workers and dietician. The heart transplant program at Children’s Medical Center of Dallas/UTSW performs approximately 20 or more transplants per year, and 15 or more VADs. The 4th year fellow will be involved in all aspects of taking care of these patients including ICU management, acute care cardiology and outpatient. The fellow will be expected to perform a clinical research project during the year.
To Apply: Email Ryan Butts, MD or Priscilla Castro
Loma Linda University Children's Hospital
Loma Linda, California (60 miles east of LA)
Looking for: Pediatric Heart Failure & Transplantation Cardiologist (junior position)
Responsibilities: Loma Linda University Children’s Hospital is seeking a Pediatric heart failure and transplantation Cardiologist.
- Formal 4th year fellowship training or experience in Pediatric heart failure, cardiomyopathy, transplantation, and mechanical circulatory support
- board certified/eligible in Pediatric Cardiology
- interest/experience in pulmonary hypertension medicine highly encouraged
- Current trainees are welcome to apply
- Faculty position with the Loma Linda University School of Medicine
- Basic Pediatric Cardiology duties (weekly outpatient clinics, call and inpatient consultation service)
To Apply: Email Matthew Bock, MD or Micheal Kuhn and complete application on socaldocs.com (click 'JOBS' in the top navigation, then search for position ‘Pediatric Cardiologist - Heart Failure and Transplantation')
