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

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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.
Funding Information
  • National Institute of Diabetes and Digestive and Kidney Diseases (T35DK126628)

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