Dear ACTION Community,
We are preparing for our upcoming Heart Failure Committee & Leadership meeting, taking place on March 5–6, 2020 in Philadelphia. We will be discussing many new projects focused on heart failure. Many of our projects focused on VAD will continue simultaneously as we embark on broadening our network’s scope to heart failure. Thank you for your continued efforts with this exciting work!
Regards,
PATIENT FAMILY STORY
“It’s Really Just the Beginning”
“It’s Really Just the Beginning” – Kathleen Yago, mom of Hana Yago, tells the story of diagnosis, living with a Berlin Heart, and receiving a life-saving heart transplant.
Thanks to families and patients like Kathleen and Hana who share their stories for advocacy, support, and awareness!
If you have a story to share, please visit our blog to submit it
Welcome Chloe!
Please help us welcome Chloe Connelly, our new Data Analyst
I am excited to join the ACTION team as a data analyst! I am passionate about using data and analytics to empower people to make the best, most data-informed decisions. I look forward to being able to apply my statistics and data analysis background to such important and impactful work with ACTION.
My bachelor’s and master’s degrees are in sociology. Most recently, I worked as an Institutional Research Analyst at Xavier University in Cincinnati. Before that, I was at National Public Radio on the social science program Hidden Brain.
I’m thrilled to be able to work with such a great team to improve outcomes for kids across the country and beyond!
– Chloe
5 new ACTION items!
Watch our newest full length video:
Meet the ACTION Learning Network
Link to video: https://youtu.be/ZlZS9yaQKVQ
Please like and share the video, and subscribe to our YouTube channel!
Highlights Report Now Available!
The 2019 ACTION Highlights Report is out now! Thanks to our amazing network of providers, patients, families, researchers, industry & regulatory partners for collaborating to achieve these results!
New Referral Guidelines from ACHD/HF Awareness & Fontan Committee!
Considerations for Advanced Heart Failure Consultation in Congenital Heart Disease (CHD) Patients is available.
ASAIO Journal Publication
Our new paper, The Creation of a Pediatric Health Care Learning Network, published in ASAIO Journal (open access), describes how we are trying to save and improve the lives of children with heart failure through ground-breaking collaboration! Congratulations on this important publication!
Easier Data Entry on RedCap 3.0
REDCap 3.0 is now live for the ABC’s of reducing stroke project! Data fields have been reduced and streamlined for easier data entry. Please continue to enter your REDCap data for the first 8 weeks of implant!
Upcoming EventsMarch 5–6, 2020 April 23, 2020 May 13–15, 2020 June 10–11, 2020 June 11–13, 2020 September 24, 2020 |
16th Annual MCS & CPB MeetingMay 13–15, 2020 |
Registry Database
Updates
New Electronic Form
The ACTION Data Coordinating Center (DCC) now has an electronic form for requesting data. Please use this ACTION Data Request Form for all data requests.
Note: this is not a project proposal form. Examples of data requests include data for abstracts, data for institutional and
meeting talks/presentations, etc.
Quarterly Reports
ACTION DCC shared the 2nd network-wide quarterly report in January 2020. This report was based on registry data extracted on Nov. 5th, 2019. This report was shared with PIs of sites that had DUA/IRB approval sites.
ACTION DCC’s next step is to include center-specific reports in future if the center has more than 25 patients.
Data Entry Classification For Prospective And Retrospective Patients
Overview of data entry guidelines for prospective and retrospective patients:
Forms required for the retrospective data collection:
- Enrollment
- Implantation/Replacement (including SV if applicable)
- Hospital Course
- Antithrombotic Post-OP
- Only complete Medication used and date started for each (no target values or date achieved for target)
- Follow-up forms:
- Week 1, and 4
- Month 2, 4 and 6
- Yearly
- For each follow-up form, complete ONLY items 1-3, 6–9 and device exchange question
- Follow-up date
- Device model implanted
- Transplant listing status
- Care Location
- Re-admission
- Medical Support
- IV inotrope use
- Pump exchange
- Explant form
- Adverse Event forms (except PSOM Exam)
- Death form
Email us: ACTION.DCC@cchmc.org
Quality
Improvement
Updates
ABC Stroke
Please continue to enter your ABC stroke data for the first 8 weeks of implant. Entering data is foundational to doing QI work, and our projects cannot succeed without timely data!
The ABC change package is currently being developed to help new teams or teams who initially didn’t test the bundle better understand how to incorporate these best practices.
A: Anticoagulation committee is setting ranges/goals for bival, and will continue to collect data to test the protocol with the new ranges. New ranges are coming soon!
B: Blood pressure work is moving into maintenance mode as consistently controlled blood pressure data is being sustained with an average of 95%. This is exciting news!
C: Sites should continue to use the communication checklist on daily rounds. There is a new definition as to what “checklist completion” means.
Discharge and De-escalation
During February’s committee meeting, Texas Children’s shared their team’s learnings and highlighted that the Flight Plan helped them identify where patients spend time in the care continuum and learned to adjust targets for various clinical goals. Thank you Texas Children’s for presenting your initial tests!
We are in the process of creating the first round of QI charts, which will be available soon. For teams testing the Flight Plan and Journey Map, please continue to enter data into REDCap. We have four patients entered already and are eager to learn from others!
Open Positions in ACTION Centers
Phoenix Children’s Hospital - The Heart Center
Phoenix, AZ
Looking for: Registered Nurses who are looking to swap the gloomy winter days, for some permanent sunshine.
The Heart Center at Phoenix Children’s Hospital has an open position for a Registered Nurse to serve as a Mechanical Circulatory Support Specialist/Coordinator. The coordinator will be a member of the Pediatric Heart Failure and Transplant Team. This position will collaborate with transplant coordinators, Cardiothoracic Surgeons, Heart Center physicians and leadership, and the rest of the multidisciplinary team involved in the care of ventricular assist device (VAD) patients.
With a focus on all aspects of VAD care, this position will also be integrated with the broader transplant and heart failure teams including some shared call responsibilities.
To Apply: https://careers.phoenixchildrens.com/Positions/Posting/490687
Children's Hospital Colorado - Heart Transplant Program
Denver, CO
Looking for: Advanced Practice Provider to serve as a member of the Pediatric Heart Failure and Transplant Team in the Heart Transplant Program at Children’s Hospital Colorado. Will collaborate with Heart Failure/Transplant multi-disciplinary team involved in the care of heart failure, heart transplant, and ventricular assist device (VAD) patients. Will focus on all aspects of heart transplant care and share call with four other full-time Heart Transplant APP Coordinators.
For more than 30 years, the Children’s Hospital Colorado Heart Transplant Program has led the nation in caring for children and teens with advanced heart failure who need life-saving transplantation. We support career development of team members so we can improve the quality of life and longevity of children with heart failure and foster a community of engagement and purpose.
Requirements: Advanced Practice Provider (e.g. NP-C, FNP. PNP. PA-C) with master’s degree in nursing or other equivalent degree. Experience in pediatric healthcare. Current Colorado Nursing License or advanced provider licensure required. Current Certifications in Basic Life Support and Pediatric Advanced Life Support required. Prescriptive authority or eligible for certification required. Acute care certification required. Previous experience in transplant preferred, but not required.
Email Contact: Melanie.Everitt@childrenscolorado.org to learn more
University of California, San Francisco
UCSF Benioff Children’s Hospitals
San Francisco, CA
Looking for: The Division of Cardiology in the Department of Pediatrics at the University of California, San Francisco, and UCSF Benioff Children’s Hospitals are recruiting a new faculty member to direct the rapidly expanding pediatric heart failure, mechanical support and pediatric heart transplant programs at Benioff Children’s Hospitals (BCH) San Francisco and Oakland.
This faculty member will be responsible for the medical direction, in collaboration with the surgical director, of the pediatric cardiology heart failure/mechanical support/transplant inpatient service at BCH San Francisco, and staff pediatric cardiology heart failure/transplant outpatient clinics at both BCH SF and BCHO. Appointment will be made at the Associate or Full Professor ranks of the In Residence, Clinical X, or Clinical Health Sciences (HS) faculty series.
The University of California San Francisco (UCSF) is one of the top biomedical research institutions in the nation. In 2019, UCSF Benioff Children’s Hospitals ranked in all 10 children’s specialties in U.S. News and World Report. Nestled in a geography distinguished by unprecedented innovations in technology, UCSF and the Department of Pediatrics are able to bring research and industry together to advance health.
Requirements: Medical Degree. CA Licensed or eligible for a CA medical license. Board certification in Pediatrics and subspecialty certification in Pediatric Cardiology; including formal clinical training or adequate experience in heart failure, mechanical support and transplant. UNOS certification. An interest, commitment and experience in teaching and research is essential. Advanced 4th year pediatric fellowship training and a minimum five years’ practice experience preferred. Previous experience directing a pediatric heart transplant program preferred.
To Apply: https://aprecruit.ucsf.edu/JPF02886 with a cover letter, curriculum vitae, statement of contributions to diversity, statement of teaching, and statement of research accomplishments. Applicant’s materials must list (pending) qualifications upon submission.
Email Contact: Phillip Moore, MD, MBA
Professor of Clinical Pediatrics
