A Survey Study of Liver Donors’ Information Needs on Recipient Outcomes in High-Risk Donation Scenarios

Abstract

Introduction

Living donor liver transplantation is expanding worldwide as a treatment for end-stage liver disease, especially in high-risk recipients. No standardized information is provided to donors during the informed consent process. Consequently, variable information may be provided to the donor about the recipient, which may undermine donor-informed consent.

Research Questions

In high-risk donation scenarios, it is uncertain whether information disclosed about the recipient is sufficient for donor-informed decision-making. Would information about the recipient's potential adverse and beneficial short- and long-term outcomes help donors make a decision about donating?

Design

An online survey was conducted of previous living liver donors’ likelihood of donating and information needs regarding their recipients in 3 hypothetical high-risk clinical scenarios: alcoholic liver disease (ALD) with high relapse risk, acute liver failure (ALF), and hepatocellular carcinoma (HCC) with high recurrence risk.

Results

A total of 98 living liver donors participated in this study. Most living liver donors expressed willingness to donate to a patient in each scenario: ALD (51%), ALF (56%), and HCC (85%). Most living liver donors (56% to 93%) reported desiring information about the recipient's diagnosis, clinical condition, and projected outcomes in their donation decision-making process. Most living liver donors (82%) considered an acute consultation service to be useful in deciding whether to donate to a patient with ALF.

Conclusions

The findings suggested that transplant programs should incorporate recipient health information with recipient consent into the informed consent process and offer consultation services to support living liver donors’ decision-making.