title: Patient- and provider-reported information about transplantation and subsequent waitlisting.
abstract: Because informed consent requires discussion of alternative treatments, proper consent for dialysis should incorporate discussion about other renal replacement options including kidney transplantation (KT). Accordingly, dialysis providers are required to indicate KT provision of information (KTPI) on CMS Form-2728; however, provider-reported KTPI does not necessarily imply adequate provision of information. Furthermore, the effect of KTPI on pursuit of KT remains unclear. We compared provider-reported KTPI (Form-2728) with patient-reported KTPI (in-person survey of whether a nephrologist or dialysis staff had discussed KT) in a prospective ancillary study of 388 hemodialysis initiates. KTPI was reported by both patient and provider for 56.2% of participants, by provider only for 27.8%, by patient only for 8.3%, and by neither for 7.7%. Among participants with provider-reported KTPI, older age was associated with lack of patient-reported KTPI. Linkage with the Scientific Registry for Transplant Recipients showed that 20.9% of participants were subsequently listed for KT. Patient-reported KTPI was independently associated with a 2.95-fold (95% confidence interval [95% CI], 1.54 to 5.66; P=0.001) higher likelihood of KT listing, whereas provider-reported KTPI was not associated with listing (hazard ratio, 1.18; 95% CI, 0.60 to 2.32; P=0.62). Our findings suggest that patient perception of KTPI is more important for KT listing than provider-reported KTPI. Patient-reported and provider-reported KTPI should be collected for quality assessment in dialysis centers because factors associated with discordance between these metrics might inform interventions to improve this process.
authors.affiliation: Departments of Epidemiology and Johns Hopkins University Center on Aging and Health, Baltimore, Maryland;
authors.forename: Megan L
authors.initials: ML
authors.lastname: Salter
authors.affiliation: Surgery and.
authors.forename: Babak
authors.initials: B
authors.lastname: Orandi
authors.affiliation: Departments of Epidemiology and Surgery and.
authors.forename: Mara A
authors.initials: MA
authors.lastname: McAdams-DeMarco
authors.affiliation: Departments of Epidemiology and Surgery and.
authors.forename: Andrew
authors.initials: A
authors.lastname: Law
authors.affiliation: Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland; Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Biostatistics, Johns Hopkins University School of Public Health, Baltimore, Maryland; Departments of.
authors.forename: Lucy A
authors.initials: LA
authors.lastname: Meoni
authors.affiliation: Departments of Epidemiology and Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland; Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Nephrology Center of Maryland, Baltimore, Maryland; and.
authors.forename: Bernard G
authors.initials: BG
authors.lastname: Jaar
authors.affiliation: Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland; Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland;
authors.forename: Stephen M
authors.initials: SM
authors.lastname: Sozio
authors.affiliation: Departments of Epidemiology and Welch Center for Prevention, Epidemiology, and Clinical Research, Baltimore, Maryland;
authors.forename: Wen Hong Linda
authors.initials: WH
authors.lastname: Kao
authors.affiliation: Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland; Division of Nephrology, Hospital for Sick Children, University Health Network, and Departments of Pediatrics and Medicine, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Rulan S
authors.initials: RS
authors.lastname: Parekh
authors.affiliation: Departments of Epidemiology and Surgery and dorry@jhmi.edu.
authors.forename: Dorry L
authors.initials: DL
authors.lastname: Segev
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic / Q000628:therapy*; D016030:Kidney Transplantation / Q000379:methods* / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D012042:Registries; D006435:Renal Dialysis; D009927:Tissue and Organ Procurement; D014850:Waiting Lists
keywords: CMS Form 2728; age disparities; listing; provision of information; transplantation