Impact of the 2016 revision of US Pediatric Heart Allocation Policy on waitlist characteristics and outcomes.

Abstract

US Pediatric Heart Allocation Policy was recently revised, deprioritizing candidates with cardiomyopathy while maintaining status 1A eligibility for congenital heart disease (CHD) candidates on "high-dose" inotropes. We compared waitlist characteristics and mortality around this change. Status 1A listings decreased (70% to 56%, P<.001) and CHD representation increased among status 1A listings (48% vs 64%, P<.001). Waitlist mortality overall (subdistribution hazard ratio [SHR] 0.96, P=.63) and among status 1A candidates (SHR 1.16, P=.14) were unchanged. CHD waitlist mortality trended better (SHR 0.82, P=.06) but was unchanged for CHD candidates listed status 1A (SHR 0.92, P=.47). Status 1A listing exceptions increased 2- to 3-fold among hypertrophic and restrictive cardiomyopathy candidates and 13.5-fold among dilated cardiomyopathy (DCM) candidates. Hypertrophic (SHR 6.25, P=.004) and restrictive (SHR 3.87, P=.03) cardiomyopathy candidates without status 1A exception had increased waitlist mortality, but those with DCM did not (SHR 1.26, P=.32). Ventricular assist device (VAD) use increased only among DCM candidates ≥1years old (26% vs 38%, P<.001). Current allocation policy has increased CHD status 1A representation but has not improved their waitlist mortality. Excessive DCM status 1A listing exceptions and continued status 1A prioritization of children on stable VADs potentially diminish the intended benefits of policy revision.