title: Nonstandard Exception Requests Impact Outcomes for Pediatric Liver Transplant Candidates.
abstract: Nonstandard exceptions requests (NSERs), in which transplant centers appeal on a case-by-case basis for Pediatric End-Stage Liver Disease/Mayo End-Stage Liver Disease points, have been highly utilized for pediatric liver transplant candidates. We evaluated whether NSE outcomes are associated with waitlist and posttransplant mortality. United Network for Organ Sharing (UNOS) Scientific Registry of Transplant Recipients data on pediatric liver transplant candidates listed in 2009-2014 were analyzed after excluding those granted automatic UNOS exceptions. Of 2581 pediatric waitlist candidates, 44% had an NSE request. Of the 1134 children with NSERs, 93% were approved and 7% were denied. For children 2-18 years at listing, NSER denial increased the risk of waitlist mortality or removal for being too sick (subhazard ratio 2.99, 95% confidence interval [CI] 1.26-7.07, p = 0.01 in multivariate analysis). For children younger than 2 years, NSER denial did not impact waitlist mortality/removal. Children with NSER approved had reduced risk of graft loss 3 years posttransplant in univariate but not multivariable analysis (odds ratio 0.73, 95% CI 0.53-1.01, p = 06). Those with NSER denial had a higher risk of posttransplant death than those with no NSER (hazard ratio 2.43, 95% CI 0.99-5.95, p = 0.05, multivariable analysis), but NSER approval did not impact posttransplant death. Further research on NSER utilization in pediatric liver transplant is needed to optimize organ allocation and outcomes for children.
authors.affiliation: School of Medicine, University of California, San Francisco, San Francisco, CA.
authors.forename: H J
authors.initials: HJ
authors.lastname: Braun
authors.affiliation: Department of Pediatrics, University of California, San Francisco, San Francisco, CA. emily.perito@ucsf.edu.|Department of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, CA. emily.perito@ucsf.edu.
authors.forename: E R
authors.initials: ER
authors.lastname: Perito
authors.affiliation: Department of Surgery, University of California, San Francisco, San Francisco, CA.
authors.forename: J L
authors.initials: JL
authors.lastname: Dodge
authors.affiliation: Department of Pediatrics, University of California, San Francisco, San Francisco, CA.
authors.forename: S
authors.initials: S
authors.lastname: Rhee
authors.affiliation: Department of Surgery, University of California, San Francisco, San Francisco, CA.
authors.forename: J P
authors.initials: JP
authors.lastname: Roberts
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003661:Decision Support Techniques; D058625:End Stage Liver Disease / Q000401:mortality* / Q000601:surgery; D005260:Female; D005500:Follow-Up Studies; D015276:Health Care Rationing / Q000706:statistics & numerical data*; D006291:Health Policy; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016031:Liver Transplantation; D008297:Male; D018579:Patient Selection; D011379:Prognosis; D012042:Registries; D012307:Risk Factors; D015996:Survival Rate; D009927:Tissue and Organ Procurement; D066027:Transplant Recipients; D014850:Waiting Lists / Q000401:mortality*
keywords: United Network for Organ Sharing (UNOS); clinical research/practice; health services and outcomes research; liver transplantation/hepatology; organ allocation; patient survival; pediatrics; waitlist management