De-Escalation (Discharge) Project

The De-Escalation/Discharge Committee Leaders are continuing discussions around how to discharge more patients and expanding scope to include site specific work on transplant criteria and getting home before transplant. We have a NEW ACTION Flight Plan tool that teams are testing. The next committee meeting is on January 5th. Please continue to test the new Flight Plan and Journey Map. This project is open to all sites in ACTION. If you would like to participate in the new project scope, please email us to let us know!

Stroke Project

The next discussion meeting will be held on January 6th. The new stroke REDCap and the case presentation PPT template have been finalized. We are 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.  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. Baseline data collection ended in October and intervention planning will begin early 2022. The Meds Titration committee will use the baseline data and pilot testing 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 January 25th. 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.

Data Adjudication

Our Data Coordinating Center and Adjudication Committee has reviewed a total of 443 events from September 2019 to December 2021. A huge THANK YOU goes out to our DCC staff and Adjudication Committee co-chairs and members for this critical function of the network. Accurate & adjudicated data is the driving force of many of our projects and initiatives and continues to help inform future directions of the collaborative.

TOTAL EVENTS ADJUDICATED = 387 

• Adjudicated as classified = 273
• Events’ classification was changed as per adjudication committee recommendation = 45
• Events classified as non-event = 69

EVENTS NOT ADJUDICATED = 56

• Required more documents = 21
• No documents at all = 33
• Events occurred after transplant = 2

NEW EVENTS IDENTIFIED (ADDITIONAL) = 174

• Device Malfunction = 41
• Major Infection = 37
• Arrythmias = 7
• Multisystem Organ Failure = 3
• Stroke = 17
• Renal Failure = 7
• Neurological Events (excluding strokes) = 14
• Major Bleeding = 25
• Respiratory Failure = 4
• Right Heart Failure = 4
• Other = 15

Response Times for DCC

Have a question about data entry?  You can contact the ACTION DCC any time  for Simplified Clinical or REDCap data entry questions.  Please allow 7–10 business days for a response from the DCC.

Simplified Clinical 

We have 728 VAD patients enrolled in the Simplified Clinical database as of 12/02/2021. Thank you for all your efforts.

Update to Simplified Clinical User’s Manual 
We recently made a change to the timeframe to collect data for the 6 month follow-up form to  “+/-2 weeks.”  This is a broader range to include relevant data.

Patient Reported Outcomes

Nineteen ACTION teams are participating in Patient Reported Outcomes via the Tonic platform! E-Consent and PRO enrollment for VAD patients are active and PRO data is being collected from patients and families. Important note for participating teams: Maryna Shykova has transitioned her role at Tonic to Andrew Brytan. If you need any technical support from Tonic or need to stop patient surveys for any reason, please email Andrew directly.

DMD

Twenty-five teams are entering data and 49 patients have been enrolled for DMD Data Entry. We also have one completed 6 month follow-up form for an enrolled patient. If you need access to enter data please email us. 

CardioMEMS

CardioMEMS data entry is live and we have three patients enrolled in the project! We also have one submission of a 6 month follow-up form for an enrolled patient. If you need access to enter data please email us. 

Fontan Referral Tracking Project

We have 79 patients enrolled in the Fontan Referral tracking project! We also have 70 completed 30 day follow-up forms for enrolled patients. For sites entering this data, we have 12 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.