title: Heterogeneity and disparities in the use of exception scores in pediatric liver allocation.
abstract: Physicians apply for Model for End-Stage Liver Disease/Pediatric End-Stage Liver Disease exception points on a case-by-case basis to improve an individual patient's chances of receiving a liver transplant. This retrospective cohort study describes trends in the use of exceptions among the pediatric liver waitlist population with chronic liver disease. The cohort (n = 3728) included all children with a diagnosis of chronic liver disease listed in the United Network for Organ Sharing transplant database for first isolated liver transplant between February 27, 2002 and March 31, 2013. Exception score requests were common (34%); 90% of requests were approved. The rate of exception score requests in 2013 was five times that of 2002 (incident rate ratios [IRR] 5.25, 95% confidence interval [CI] 3.19-8.63, p < 0.01). Patients of non-White race had exception score request rates 13% lower than patients of White race (IRR 0.87, 95% CI 0.77-0.98, p = 0.02). Older patients had lower rates of exception score requests than younger patients (p = 0.03). Request rates varied by region. Time spent at an active exception status nearly tripled the hazard rate for transplantation (hazard ratio = 2.90, 95% CI 2.62-3.21, p < 0.01). There is disparity in use of exceptions by race that is not explained by clinical disease severity, diagnosis, geography or other demographic factors.
authors.affiliation: Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington; Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington.
authors.forename: E K
authors.initials: EK
authors.lastname: Hsu
authors.forename: M
authors.initials: M
authors.lastname: Shaffer
authors.forename: M
authors.initials: M
authors.lastname: Bradford
authors.forename: N
authors.initials: N
authors.lastname: Mayer-Hamblett
authors.forename: S
authors.initials: S
authors.lastname: Horslen
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003661:Decision Support Techniques; D058625:End Stage Liver Disease / Q000601:surgery*; D005260:Female; D006801:Humans; D007223:Infant; D016031:Liver Transplantation; D008297:Male; D017063:Outcome Assessment, Health Care; D018579:Patient Selection; D044469:Racial Groups; D012189:Retrospective Studies; D012737:Sex Factors; D012959:Socioeconomic Factors; D066027:Transplant Recipients; D014850:Waiting Lists
keywords: clinical research/practice; disparities; ethics and public policy; liver transplantation/hepatology; organ allocation; pediatrics