Patient and Provider Attitudes Toward Patient-Facing Kidney Organ Offer Reporting

Abstract

Introduction

In the United States (US), deceased donor kidney offers are most commonly declined by transplant centers on behalf of waitlisted candidates, without notifying them. We sought to understand patient and provider attitudes toward patient-facing organ offer reporting.

Methods

We conducted a cross-sectional survey of patients, nephrologists, and nephrology social workers on the National Kidney Foundation mailing list and the medical and surgical directors of US kidney transplant programs.

Results

Among 755 patient respondents, 64% wanted to receive organ offer reports. Patients who wanted organ offer information were younger, more likely to be of a non-White race, and more likely to be on dialysis or on the waiting list. Of the patients, 87% reported that centers should be required to tell candidates about the offers they receive, and 62% reported that candidates should be informed after every offer. Among the 107 nephrology respondents, 73% reported that candidates should be provided with organ offer information and 88% reported that they would want to receive a copy of their patients’ offer reports. Among 26 transplant program director respondents, 77% reported that candidates should not be notified of offers declined on their behalf. If organ offer reports were required, most program director respondents believed that they should include the reasons offers were declined and should not include offers for kidneys that were ultimately discarded.

Conclusions

Most patients and nephrology providers, but only a minority of transplant program directors, supported the sharing of patient-facing information about individual deceased donor kidney offers that were declined on candidates’ behalf.