Current Discharge Practices in Pediatric VAD Patients: A Survey of the ACTION Collaborative

Purpose The use of intracorporeal continuous flow ventricular assist devices (CF-VAD) in pediatric patients with advanced heart failure has allowed for patients to be discharged home. However, currently only about 50% of pediatric patients are discharged from the hospital. We sought to examine the discharge practices across the Advanced Cardiac Therapies Improving Outcomes Network (ACTION). Methods Surveys were sent to the members of the ACTION collaborative in September 2018 to determine discharge practices in preparation for a quality improvement project. Results Surveys were sent to 28 sites, with respondents from 22 sites (response rate: 78.5%). The majority of centers had discharged 1-5 patients (59.1%, 13/22) in the preceding 24 months. The remaining centers’ discharge experience in the preceding 24 months was the following: 9.1% (2/22) with >5-15 patients, 9.1% (2/22) with >15 patients, and 22.7% (5/22) had not discharged a patient. The majority of patients discharged were on the HVAD (81.8%), followed by HeartMate 3 (13.6%), HeartMate II (9.1%), and SynCardia TAH (9.1%). Barriers to discharge identified were family readiness (72.7%), patient too sick (59.9%) and distance from VAD center to home (36.4%). At the time of the survey, 45.5% of sites were following 1-5 outpatients with 50% having no outpatients. Half of the programs manage patients from remote locations with most centers (63.6%) not sharing responsibility of care with a local cardiologist. A small number of centers, 27% (6/22), had VAD patients in the outpatient setting who were not listed for transplant due to reasons such as awaiting further rehabilitation, assessment of myocardial recovery, and family preference. The majority of centers allowed patients to return to school post discharge (95.5%), to drive (63.6%), and travel nationally (77.3%) but not internationally (36.4%). Conclusion Barriers perceived by health care providers and families continue to limit pediatric centers from discharging CF-VAD patients from the hospital. As discharge and maintenance of outpatient care for this unique population is a low frequency but resource intense process, collaboration among centers to gain knowledge of best practices is valuable.