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Most live donors mistakenly believe they are well-informed of liver donation

Researchers found that people who were live donors for liver transplantation believed they were well-informed on donation, but actually lacked comprehension of the subject, according to study data.

“Questions have been raised as to whether the current informed consent process adequately informs [live donors] about the risks of [living donor liver transplant],” the researchers wrote. “Inherent to the doctrine of informed consent is that the donor expresses their autonomy and assures that their consent is given voluntarily. Despite CMS requirements and Organ Procurement and Transplantation Network guidelines for informed consent of living donors, studies report inconsistencies and problems with the informed consent process.”

The researchers from Northwestern University, Chicago, used a prospective, mixed-methods approach to assess the overall comprehension of live donors throughout the process, including information needs, perceptions of risks of donation and perceptions of the adequacy of informed consent.

They conducted interviews with 30 live donors after completing donor evaluation and informed consent at the Comprehensive Transplant Center at Northwestern University. Likert scales were measured and informed on consent domains. The donors’ open-ended responses underwent thematic analysis.

Overall, 90% of live donors reported being greatly informed about donation, with 66% of these donors actually understanding the information provided to them. Forty-percent of the donors reported they had difficulty understanding medical terminology, as well as procedures, statistical information on risks, steps involved in the surgical procedures, why living donation became an urgent matter and specific acronyms, according to the research.

Despite clinicians providing donation information to them, donors reported that they did not “utilize risk information for decision-making,” the researchers wrote. A majority of the live donors rated risks to themselves of donating as “not at all” to “somewhat,” rather than “a lot” to “a great deal” risky (83%).

Most of the live donors wanted to know the incidence and type of donor complications (67%), description of donation procedure (57%), and the process of donor preparation (43%) in order for them to feel comfortable with their decision.

“Our findings suggest that the informed consent process should be revised to effectively convey relevant information about living donation and assess donor appreciation in a standardized way,” the researchers concluded. “Improving the informed consent process may help prepare donors for the donation process and enhance postoperative functional health, greater engagement in postoperative care, quality of life and satisfaction.” – by Melinda Stevens

Disclosures: The researchers report no relevant financial disclosures.