Happy New Year to our ACTION Community!
We have many exciting plans for 2020, and are grateful for your continued efforts to make this all possible! We have new projects emerging with our Heart Failure, Waitlist Outcomes, DMD, and ACHD Fontan committees, and we have several in-person meetings scheduled for this year (see upcoming events below). Please let us know if you have an interest in joining any of our current or new projects.
Regards,
——— S P O T L I G H T O N ———
ACTION Leader:
Jenna Murray, CPNP-AC
LOCATION: Stanford Children’s Hospital
POSITION: Ventricular Assist Device Coordinator/Nurse Practitioner, 6 years
ACTION ROLE: Co-leader of the Communication & Anticoagulation committees
What inspired you to join ACTION?:
I am a born fixer. ACTION is amazing for that. We are not all reinventing the wheel we are pooling what we have to make things better for patients not in our own institution but across the nation. Learning from our pooled and experiences and coming up with ways to learn how to make it better for kids with advanced heart failure—sign me up!
What is the scope of your job?
I am truly fortunate to work with the wonderful team her at Stanford Children’s. I meet patients pre-vad and care for them from implant until their transplant. I have my hands in all areas that VAD patients can be in, CVICU, floor, OR, outpatient and try to be a continuity clinician for the VAD patients. Whether it is rounding in the ICU, preparing the patient on the floor for discharge, seeing the kids in clinic or helping support the VAD during a procedure, like the rest of my VAD coordinator colleagues, we do it all!
What is most rewarding about your job?
The innovation of new VAD technology to help children with all different kids of heart disease and then trying to move that care out of the hospital to make them be as “normal” as possible.
What keeps you up at night?
Families that are struggling with feeling supported and subtherapeutic anticoagulation.
How do your patients impact your life?
Each patient I think leaves me a little better. I learn so much from the patients and families I care for as well as the ones that have joined ACTION. Their perspective is so vital to the work of the network. The patients and families is what makes this at times very hard work so rewarding.
If you could miraculously produce one innovation that would affect patient's care/outcomes, what would it be?
An implantable pump that makes kids look like every other kid, and does not cause a stroke.
Best resource for families:
FACT group! Also talking to your team directly and not going down the internet rabbit hole is the best thing I have found.
Favorite hobby: Traveling
Favorite food: Pizza
New educational video available for patients & families:
Waiting for my New Heart
Developed by ACTION's Waitlist Outcomes Committee, with assistance from our Education Committee & Families in ACTION (FACT) Advisory Council.
Link to video: https://youtu.be/LsjK5uNscks
Please like and share the video, and subscribe to our YouTube channel!
Upcoming EventsMarch 5–6, 2020 April 2020 (Date likely April 23) May 13–15, 2020 June 10, 2020 June 11–13, 2020 September 24, 2020 |
16th Annual MCS & CPB MeetingMay 13–15, 2020 |
Duchenne’s Muscular Dystrophy (DMD) Care Practices ACTION Survey
A survey of DMD providers through ACTION was undertaken to assess current practices and needs in the treatment of this population. Forty providers responded (95% cardiologist, 5% nurse practitioners).
While there was broad agreement that early cardiology involvement as part of the multi-disciplinary muscular dystrophy was their practice (87.5%) of respondents, there was also no clear consensus as regards age of initiation and use of common therapies, including steroids and standard oral heart failure therapies.
A majority of respondents (92.5%) would recommend listing for transplant in appropriate patients, and a majority (87.5%) also agreed with the use of an LVAD in this population, although predominantly as chronic care (86%) as opposed to short-term transition to transplant (14%).
The group highlighted several areas of need in the care of this population, including standardization of medical management (72.5%), multi-center cardiac outcomes data (57.5%) and consensus for use of both VADs (55%) and ICDs (42.5%).
Registry Database
Updates
Exciting Announcement!
The ACTION Data Coordinating Center (DCC) now has an electronic form for requesting data from the ACTION network.
Please use this ACTION Data Request Form for all data requests. Please 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.
A: Anticoagulation committee is setting ranges/goals for bival and is starting to look at the heparin data to write up a heparin standardization protocol
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 January’s committee meeting, Cincinnati Children’s highlighted their team’s learnings as they tested the interventions on one patient. The patient and family were very engaged and even personalized the Journey Map.
For teams testing the Flight Plan and Journey Map, please continue to enter data into REDCap. We have three patients entered already and are eager to learn from others!
New manuscript released in Pediatrics highlighting the critical need, and the learnings to date from the Roadmap initiative.
Roadmap Initiative: An effort with the American Board of Pediatrics to improve emotional support and resilience for children with chronic conditions and their families.
Written collaboratively as a “Family Partnerships” article, it is co-authored by Diane Pickles and Stacey Lihn, mothers of children with congenital heart disease who, along with another parent, were the impetus for the American Board of Pediatrics’ support for Roadmap; by Thomas Boat, MD, and Carol Lannon, MD, MPH.
Together, they alert pediatricians to the great need to support resilience and emotional health, the connection to outcomes and health care costs, and provide resources and tools to help pediatricians begin (or improve) their conversations with patients and families.
A crucial message to all pediatricians, specialists and generalists, is “You don’t have to be a mental health professional to make a difference. Parents emphasize they don't expect their pediatricians to be mental health experts. But the pediatrician’s interest and support is tremendously valued, and validating the stress patients and families feel can open the door to discussion.”
The article is available in full, without a Pediatrics subscription, here:
https://pediatrics.aappublications.org/content/early/2020/01/07/peds.2019-1324
A science blog based on Roadmap and the article is available here.
Open Positions in ACTION Centers
UCSF School of Medicine &
UCSF Benioff Children's Hospital
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 provide pediatric heart failure, mechanical support and pediatric heart transplant cardiology expertise in both the inpatient and outpatient areas at Benioff Children’s Hospitals (BCH) San Francisco and Oakland. The faculty member will attend on 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 Assistant, Associate or Full Professor ranks of the Health Sciences (HS) Clinical or Clinical X faculty series.
Clinical duties include: Heart Failure/Mechanical Support/Transplant Consultation Service (to be equally shared), General Cardiology Inpatient Service (8 weeks per year), Outpatient Clinics (1/2 day per week)
UCSF is one of the top biomedical research institutions in the nation. The Department of Pediatrics trains 84 pediatric residents, 83 fellows, and 31 post-docs. In 2019, UCSF Benioff Children’s Hospitals ranked in all 10 children’s specialties in U.S. News and World Report.
Requirements:
• Medical Degree and CA License
• Board certification in Pediatrics and subspecialty certification or eligibility in Pediatric Cardiology; including formal clinical training or adequate experience in heart failure, mechanical support and transplant
• Advanced 4th year pediatric fellowship training and/or three years’ practice experience and UNOS certification is preferred
• An interest, commitment and experience in teaching and research is essential (estimate 20% time)
To Apply: Visit https://aprecruit.ucsf.edu/JPF02806, include a cover letter, curriculum vitae, statement of contributions to diversity, and statement of research accomplishments.Email Contact: Jeffrey Gossett
Professor of Clinical Pediatrics
