Summary
Adolescents living with a VAD at home are a growing group, as durable ventricular assist devices increasingly support young people outside the hospital. What that period is like day to day has received little study.
Researchers at ACTION sites interviewed 17 adolescents and young adults, ages 12 to 22, who had been discharged home on a durable device within the previous three years. Interviews followed a 34-item guide developed from prior literature and reviewed by a team that included a young adult on VAD support alongside family advocates and clinicians. All participants were supported on a HeartMate 3, most often for dilated cardiomyopathy, with time on device ranging from about two months to more than two years.
Emergency situations were the most commonly reported worry, named by 82% of participants, followed by infection and bleeding at 71% each. Every participant described some limitation, most often on time with friends, on sports, and on freedom of movement.
The authors conclude that psychosocial support deserves a larger role in outpatient VAD care, and point to peer and caregiver support groups and online communities as directions worth developing.
This ACTION study was published on September 16, 2026 in the JHLT Open. Congratulations to the authors:
- Eleanor Greiner, MD
- Katie Flaspohler
- Mary C. Jenkins, MD, MEd, MS
- Dean S. Karahalios, DO
- Michelle Mijon, RN, BSN, CCRN
- Shannon Oliver, MBBS
- Zachary Hutchinson, MD
- Anna Joong, MD
- Joseph Spinner, MD
- Melissa K. Cousino, PhD
