Dear Community,
How is September different from August, really? The kids are back in school, the days are shorter, and High Holy days have passed. We are also closer to starting the ACTION leadership class (very exciting!) and make sure to register and join us tomorrow for our 2021 Fall Meeting (details below). We will be meeting virtually (of course), and although we’d all prefer to get together in person, we are very excited about the meeting and the chance to connect. Hope we will see you all there for a lively session!
Regards,
LAST DAY TO REGISTER!
Join us virtually tomorrow for the
2021 ACTION Fall Meeting
September 30, 2021 | 1–4 PM ET
WHO?
All are invited!
(clinicians, parents, patients, industry, etc.)
WHAT?
The ACTION Fall 2021 Virtual Meeting
Zoom Meeting Agenda | More info
WHERE?
Your choice of location, our choice of platform: Zoom!
Can't wait to see all of you tomorrow!
Wednesday, October 6, 2021
4 PM ET (3 PM CT)
DO I: 10.1016/j.hea I u n.2021.04.015
The writing group for the ISHLT consensus statement has put in a significant amount of work to write a comprehensive and practical guide to care of pediatric VAD patients. This statement covers all aspects of care including patient selection, patient and device management as well as outcomes. As the utilization of VAD continues to slowly increase in the CHO population, often small single ventricle patients, new challenges are emerging. This episode of PHTS Live! will be dedicated to hearing from the experts/ authors of the statement about some of these key issues and will be jointly hosted with ACTION learning network. Particularly, we will discuss issues with patient selection/ timing of device, some key pearls of perioperative management and management issues during the BTT phase in both cardiomyopathy and congenital heard disease patients. This will be a valuable discussion for
ICU team members, HF and VAD team members, transplant team members, cardiologists and surgeons.
Followed by Q&A
________
Expert Panel
Angela Lorts, MD, MBA
ACTION Co-Director, & Director, Ventricular Assist Device Program, Cincinnati Children's
Jennifer Conway, MD, FRCPC
PHTS President, & Director of the Pediatric Heart Function and Cardiomyopathy Program, Stollery Children’s Hospital
________
pediatrichearttransplantsociety.org/phts-live/
Registration is free and open to anyone interested in participating.
________
This PHTS Live session will be recorded and available to watch after it has concluded. CME credit can only be given to those who register and join the meeting live.
The University of Alabama School of Medicine is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.
The University of Alabama School of Medicine designates this Regulatory Scheduled Series for a maximum of 1 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
The University of Alabama School of Medicine is an equal opportunity/affirmative action institution.
PATIENT FAMILY STORY
———
One weekend, Jimmie noticed his 16-month-old daughter, Brynn, was breathing strangely. One week later, Brynn was heading into surgery to be placed on a VAD. For half a year, Jimmie and his wife, Kristyn, waited by the phone for the transplant call. The family had many long nights, learned how to navigate their lives with a VAD, and finally reached the end of a dark tunnel.
We thank Brynn and her family for sharing their story in an effort to promote advocacy, support, and awareness!
If you have a story to share, please contact us or visit our stories webpage to submit it!
Check it out!
Berlin Heart EXCOR® Patient Education Handbook now available!
The eBook version is available on both the patients/caregiver and provider sides of My Action Education as well. Centers that responded to our Berlin Heart implantation survey will begin receiving copies of the handbook soon. If you have any questions, please email us.
Quality Improvement Updates
New Monthly VAD Measures Survey
We have instituted a new monthly REDCap survey for self-auditing of VAD implants. The survey also contains a few questions about our quality improvement measures. This was launched on September 8th and was sent to PI’s and VAD Coordinators at ACTION centers. Just like everything we do, this will be a PDSA and we would love feedback.
De-Escalation (Discharge) Project
The De-Escalation/Discharge Committee Leaders are continuing discussions around how to discharge more patients and expanding scope to include best practices for listing patients for transplant. We have been making edits to the ACTION flight plan tool and are aiming to roll it out for testing very soon! New data collection for this project will also roll out with the new flight plan (we are making the data entry as minimal as possible). More details for the project focus, revised flight plan, and data entry will be discussed in our upcoming committee meeting on October 6th. Please continue to test the Flight Plan and Journey Map. If your site is not part of this project but would like to join, please email us to let us know!
Stroke Project
The next discussion meeting will be held on October 7th. We are finalizing the new stroke REDCap and the case presentation PPT template. Once final, we will be reaching out to sites that have submitted stroke events to schedule them for upcoming clinical discussion meetings. By reviewing each individual stroke event we hope to reduce stroke rates even further for VAD patients.
Additionally, the Anticoagulation Committee work is going to absorb into the new stroke reduction work of the network. We will continue this important AC work with our monthly stroke Data & Discussion calls as we review stroke trends and develop new interventions. Thank you for all of your efforts thus far! Please continue joining us for our stroke meetings the first Thursday of each month from 4:30–5:30pm EST. Please email us with any questions!
Medication Titration Project
The project focus around optimizing and uptitrating medicines for heart failure patients is underway. 10 teams started collecting baseline data on August 19th. The Meds Titration committee will use this baseline data to inform and create an ACTION recommended protocol.
Heart Failure Project
Teams continue to test the two interventions: a communication checklist and a discharge plan. We are aiming to reduce length of stay for heart failure patients admitted to the hospital, as well as decrease readmissions. The next meeting will be on October 26th. Please continue to enter data into the enrollment REDCap for all heart failure patients, not only patients that have used the interventions. Please see the NEW Heart Failure Data Entry infographic to know when and where to enter data for this project.
Registry Database
Updates
PowerBI
The new ACTION PowerBI environment is fully established with network wide and site specific reports. To access the environment, use the following link and login with your ACTION credentials:
https://app.powerbi.com/home?ctid=0af35862-78c9-45dd-9f55-70c76e0d813f
Email Kyle with any questions or issues logging in.
Simplified Clinical
We have 679 VAD patients enrolled in the Simplified Clinical database as of September 8, 2021. Thank you for all your efforts!
Patient Reported Outcomes
19 ACTION teams are participating in Patient Reported Outcomes via the Tonic platform! E-Consent and PRO enrollment for VAD patients are now active. For teams participating in this project, all materials are available on Basecamp, including the Tonic Training Video from July’s trainings.
DMD
25 teams are entering data and 20 patients have been enrolled for DMD Data Entry. We also have 2 completed 6 month follow-up forms for the enrolled patients. If you need access to enter data please email us.
CardioMEMS
CardioMEMS data entry is live and our first patient has been enrolled in the project. If you need access to enter data please email us.
Fontan Referral Tracking Project
We have 77 patients enrolled in the Fontan Referral tracking project! We also have 65 completed 30-day follow-up forms for the enrolled patients. For sites that have been entering this data, we have 13 incomplete 30-day follow-up records. Please check your form completion status and submit these forms at your earliest convenience. If you are interested in entering data for this project please email us.
Open Positions in ACTION Centers
University of Minnesota
Minneapolis, MN
Looking for: Faculty Physician – Director Pediatric Cardiology- Heart Failure/Transplant (Assistant, Associate or Professor – Academic Track)
Responsibilities: Seeking an individual with a strong interest in Pediatric Heart Failure, Mechanical Circulatory Devices and Pediatric Heart Transplant. Participate in pre- and post-transplant cardiac evaluation and treatment of cardiomyopathies and heart failure due to different etiologies. This position will include general pediatric cardiology care in/at University of Minnesota Masonic Children’s Hospital and depending on expertise and interest, the position may also participate inpatient and outpatient service. Additional responsibilities will include: participation in the teaching of medical students, residents, and fellows, clinical practice through UMPhysicians, and participation in service activities on behalf of the department, the medical school, and your profession. The successful candidate will participate in research projects and other academic/scholarly activities either as a collaborator or independent researcher, and participate in faculty development activities tailored to the candidate's career interests and goals.To Apply: To learn more and apply, see the full job posting.
Email Contact: Connie Franklin, Physician Recruiter
University of Minnesota
Minneapolis, MN
Looking for: Faculty Physician – Pediatric Cardiology- Heart Failure/Transplant (Assistant or Associate Professor – Academic Track)
Responsibilities: Seeking an individual with a strong interest in Pediatric Heart Failure, Mechanical Circulatory Devices and Pediatric Heart Transplant. Participate in pre- and post-transplant cardiac evaluation and treatment of cardiomyopathies and heart failure due to different etiologies. This position will include general pediatric cardiology care in/at University of Minnesota Masonic Children’s Hospital. Depending on expertise, the position may also participate in echocardiographic interpretation, and inpatient and outpatient service. Additional responsibilities will include: participation in the teaching of medical students, residents, and fellows, clinical practice through UMPhysicians, and participation in service activities on behalf of the department, the medical school, and your profession. The successful candidate will participate in research projects and other academic/scholarly activities either as a collaborator or independent researcher, and participate in faculty development activities tailored to the candidate's career interests and goals. Academic time will be used to pursue scholarly work in the candidate’s area of specialty/research experience with a goal of developing collaborative or independent, externally funded research.To Apply: To learn more and apply, see full job posting.
Email Contact: Connie Franklin, Physician Recruiter
