Variation in Cardiac Rehabilitation for Pediatric Ventricular Assist Device Recipients across North America: An ACTION Network Survey

Abstract

Despite increasing utilization of ventricular assist devices (VAD) in pediatric heart failure, data on exercise testing and training through cardiac rehabilitation (CR) programs have not been reported to date in this population. We aimed to describe variation in attitudes and practice and understand barriers to CR among pediatric VAD centers in North America. An online survey was performed through the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) representing pediatric VAD centers across North America. Descriptive statistics were performed. For multiple-choice questions, more than one answer choice was allowed. A multidisciplinary cohort of 52 respondents from 28 North American pediatric VAD centers completed the survey. Although 52% of respondents reported conducting exercise tests on VAD patients, most of those were six minute walk tests (89%) instead of formal stress tests (32% stationary bike and 16% treadmill). In regards to exercise training, while all centers utilize physical therapy early post-implant, only half (53%) refer to a formal CR program. If CR is performed, it is usually done at the ACTION center (84%), a local specialized center (21%), or a mix of the two (5%). A few (5/19, 26%) reported utilizing a home-based CR program. The most commonly reported barriers to exercise testing in pediatric VAD patients were inadequate center resources and expertise, and a perception of low clinical utility. The dominant reported barriers to standardized CR were inadequate staff to supervise sessions (70%), inability of patients/caregivers to travel to the CR facility (55%), and inadequate knowledge of how to implement a CR program (45%). Safety concerns were relatively rare (5%). Over 90% of respondents were interested in implementing a standardized CR program at their center. There is significant variation in attitudes and practice regarding exercise testing and training for pediatric VAD patients among North American centers. Despite perceived barriers, there is broad interest in a standardized CR program. Based on these survey data, we are implementing a CR toolkit across ACTION centers with the aims of harmonizing practice, as well as demonstrating feasibility, safety, and early efficacy.