MISPERCEPTION OF TRANSPLANT LISTING STATUS AMONG HEMODIALYSIS PATIENTS

Purpose: Perceptions among end-stage renal disease patients of their transplant listing status are important determinants of their likelihood to be actively listed for an organ. The goal of this study was to compare patients' perceptions and actual listing status in the United Network for Organ Sharing (UNOS) database.

Methods: End-stage renal disease patients receiving chronic, in-center hemodialysis were enrolled in a randomized trial evaluating the effectiveness of a behavioral intervention to increase the completion rate of advance directives. Patients completed a demographic survey that included a query regarding their current transplant listing status. Patient response was compared to the listing status documented by UNOS. The primary outcome was patient misperception of true listing status as defined by discordance between the patient and UNOS reports. Descriptive statistics were used for patient and dialysis clinic characteristics. We used t tests or Wilcoxon rank-sum tests, and chi-square tests, as appropriate, to compare patient and clinic characteristics between the "unaware" and "aware" cohorts.

Results: The study cohort included 298 patients from 15 outpatient dialysis centers in the greater Philadelphia region. Mean patient age was 57 years, 58% were male, 77% were African American, and 55% had completed 12 years or less of education. Ninety five (32%) of patients reported a transplant listing status that did not match with UNOS, 18 of whom did not know whether they were listed or not. Among the 120 patients who reported being listed, only 52% were actively listed according to UNOS, and 19 (12%) of 160 who said they were not listed for a kidney transplant actually were. Compared to patients who accurately knew their transplant listing status, unaware patients were younger (mean age 58 vs. 55, p=0.04) and had higher physical function scores (mean SF-12 PCS 41 vs 38, p=0.03).

Conclusions: Lack of awareness of kidney transplant listing status is common, and may be more prevalent among younger, more functional patients. Additionally, self-reported transplant listing status is likely to overestimate true prevalence of active listing status. These findings highlight the need for dialysis and transplant centers to improve the quality of care with accurate and timely communication to patients regarding their true listing status.