Watch the newest video in our “Patients Teaching Patients” educational video series: https://youtu.be/L699wEaoBas.
Christian & Ricky have Muscular Dystrophy. Both of their hearts became weakened, and they needed something to help them feel better and live longer. They each got a Ventricular Assist Device (VAD) to help their weak heart pump blood to their body.
Watch as Christian & Ricky teach you about their HeartMate 3 VAD. At the Advanced Cardiac Therapies Improving Outcomes Network (ACTION), we are working hard to collaborate across pediatric VAD programs to help improve outcomes and standardize best practices for patients like Christian & Ricky. Thanks for watching!
The ACTION Discharge & Outpatient Committee surveyed the collaborative in October 2018 regarding the discharge process and perceived barriers to discharge. 21 centers responded. This summary was presented in the March 2019 ACTION newsletter.
Most centers have a small outpatient VAD cohort, suggesting that many patients are bridged to transplant soon after VAD implant. Of the respondents, 47% had 1-5 patients on outpatient VAD support at the time of the survey while another 47% had no outpatient VADs at the time of survey. A minority of centers, <25%, had not discharged VAD patients (who were eligible) during the last 2 years of implant.
The most common durable VAD managed in the outpatient setting was the HeartWare, followed by the Heartmate III, Heartmate II, and SynCardia.
A majority of centers, 86%, have a standardized protocol for discharge and utilize a VAD coordinator for VAD teaching in the inpatient and community settings. Centers frequently addressed the following topics in preparation for discharge: driveline dressing, use of a shower bag, teaching, emergency management, and establishing plan with local EMT. Many centers also utilized field trips with or without a chaperone to assess readiness for discharge.
Centers reported the following barriers to discharge (in order of most frequently reported): family readiness, patients too sick, patients live at distance from implant center, and lack of support staff.
Majority of patients were actively listed for transplant while outpatient. Some reasons why a patient may not be actively listed for transplant include need for further rehabilitation, patient/family preference, and less commonly to assess for myocardial recovery.
We hope that this information will be valuable to all the committees in preparing for ACTION’s next QI initiative- D for DISCHARGE!