Dear ACTION Community,
COVID-19 is still very much with us, and is shaping our professional and personal lives in ways that continue to evolve. Many of us are also experiencing covid-fatigue, and are seeking ways to continue the work we have chosen to conduct in ACTION and at our institutions. Working together in ACTION, we have developed some really good patient-facing education materials in collaboration with other transplant organizations (IROC, PHTS, and STARZL), and have helped address families’ concerns about COVID through webinars as well (Thanks, Marc R!). Ongoing issues with COVID include a new ACTION-PHTS initiative to integrate telehealth into VAD, waitlist and transplant care.
We recognize that every institution is affected differently and at different times, by the pandemic and the economic havoc it has brought to us all. We are resuming a more normal pace of activities within ACTION, including new initiatives. However, if you are temporarily unable to engage in these, we will find ways to help you resume when you are ready and able.
Lastly, due to our in-person meetings and conferences being canceled, we are planning a webinar series to begin soon. We will present and discuss ACTION data and discuss other hot topics in our field. Stay tuned!
As always, stay healthy and well!
Regards,
PATIENT FAMILY STORY
Dylan's Heart Transplant Story
Melissa, mom of Dylan, tells us all about their amazing and successful journey through heart transplant surgery and recovery.
Thanks to our patients and families like Dylan and Melissa who share their stories for advocacy, support, and awareness!
If you have a story to share, please visit our blog to submit it
New ACTION items!
We've joined forces with other networks to keep everyone up to date.
Make sure to check the ACTION COVID-19 page weekly to get the most up-to-date version of the COVID-19 FAQ's: For Children with Solid Organ Transplant or Heart Failure document. This Document incorporates Q&A's from other networks/groups such as PHTS, IROC, STARLZ and Transplant Families.
¿Hablas Español? Many of our COVID-19 infographics and inpatient posters are also now available in Spanish!
NEW INFOGRAPHICS!
1
Made to Move Exercise Infographic
This new infographic outlines the benefits of a healthy lifestyle and suggests different forms of exercise for patients with heart disease.
2
10 Things to Know About Pediatric Heart Transplants
Released in time for National Pediatric Transplant Week last week, this two page infographic illustrations five important facts and five frequently asked Q & A's about pediatric heart transplants.
Read all about it!
Check out our newest publications webpage that will house all the latest ACTION publications.
Cancelled Events
May 13–15, 2020 (CANCELLED)
16th Annual MCS & CPB Meeting
Cincinnati, Ohio
September 24, 2020 (CANCELLED)
ACTION Meeting at Heart Failure/VAD Summit
St. Louis, MO
September 25–26, 2020 (CANCELLED)
International Pediatric VAD and Heart Failure Summit
St. Louis, MO
Upcoming Events
June 10, 2020 (NOW VIRTUAL)
Pediatric Day at ASAIO
Chicago, IL
October 4–7, 2020
30th International Symposium on ACHD
Cincinnati, Ohio
(RESCHEDULED from original dates June 11–13. ACTION meeting information during this event coming soon). See more event information below
Registry Database
Updates
Kudos to all sites for their contribution in improving the registry. We have identified some common queries in data completion and want to clarify some fields in “Hospital Discharge” form:
- Date 1st transfer from ICU: This field requires the very first ICU transfer date post implant but still on device. If the device is explanted while in the ICU or patient transplanted or died during the first ICU stay post implant, explant, transplant or death date would be entered here.
- At time of initial hospital discharge or at transplant/explant, total number of ICU days following VAD implantation: This field requires all ICU days in the implant hospital stay while the patient was on device. If the device was explanted and patient is still in the ICU post-transplant or for other reasons, those days should not be included.
- Date of discharge from hospital on VAD or explant for death, recovery or transplant: For patients that were transplanted during the implant hospitalization, died or recovered, this data should be same as explant date (also transplant date or death date)
- If a device course for a subject has ended in ACTION registry, please first complete the ‘End of Study” (EOS) form even if other forms are in the process of completion.
Email us: ACTION.DCC@cchmc.org
Quality
Improvement
Updates
Thank you to those who continue to share learnings and experiences on the weekly COVID-19 calls with ACTION and PHTS. As you may have heard during these meetings, we are developing a Telehealth QI project to improve virtual encounters for both teams and patients/families. Working groups will begin soon to understand current state and barriers, and will begin to develop interventions. More details to come!
The next Discharge Committee meeting will take place on May 6. Please continue to enter data in REDCap on any patients who have been discharged.
Leadership is diving into the Stroke QI work to better understand how we can reduce strokes even further. The stroke reduction work will re-launch in the next few months. Please continue to enter data into REDCap for your VAD patients.
