Standardized information for living liver donors

Authors

  • Elisa J. Gordon Ph.D., M.P.H.,

    Corresponding author
    1. Institute for Healthcare Studies, Northwestern University Transplant Outcomes Research Collaborative, Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL
    • Institute for Healthcare Studies, Department of Surgery, Division of Organ Transplantation, Comprehensive Transplant Center, Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Medical Humanities & Bioethics, Feinberg School of Medicine, Northwestern University, 420 East Superior Street, 10th Floor, Chicago, IL 60611
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    • Telephone: 312-503-5563; FAX: 312-503-2777

  • Daniela P. Ladner M.D., M.P.H.,

    1. Department of Surgery (Division of Transplantation), Northwestern University Transplant Outcomes Research Collaborative, Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL
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  • Talia Baker M.D.

    1. Department of Surgery (Division of Transplantation), Northwestern University Transplant Outcomes Research Collaborative, Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL
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Standardized Information for Living Liver Donors

TO THE EDITOR:

In a previous issue of Liver Transplantation, Melloul et al.1 report that Internet Web sites are highly variable in the quality of the information presented on living liver donation. Accordingly, prospective donors may not have access to desired or established risk information. They conclude that “there is an urgent need to produce a Web site compliant with international standards for the quality of donor information.”

This call for standardized information for living liver donors is both timely and highly important for driving the field of living donation toward more effective and ethically sound informed consent practices. Providing essential information to prospective living liver donors is necessary to optimize their understanding and ensure that they are fully prepared to undergo the donation process.2 However, systematic reviews indicate that prospective living liver donors are not sufficiently informed and do not adequately comprehend the information that they receive about donation procedures and associated risks.3, 4

Thus, there is a great need to provide standardized information to prospective living liver donors to supplement the current informed consent process. Currently, there is no standardized approach to information disclosure for informed consent in this population. The variation in consent processes across transplant providers and centers may introduce inadvertent bias in the disclosure (or underdisclosure) of risks to prospective living donors, and this might limit their comprehension, preparedness, and ability to provide adequate informed consent.

Because informed consent is a multidisciplinary process, standardization is important in order to provide a consistent message to patients across centers. Accordingly, standardization can help to resolve the inherent fragmentation in the educational process between providers within the health care system.5

Web-based educational tools are touted as effective approaches for fostering comprehension within the informed consent process in other clinical contexts.6 Indeed, there is increasing support for such Web-based consent interventions within the field of surgery.7 Such Web sites could deliver information in an accessible, low-literacy manner in order to facilitate an informed decision-making process for prospective living liver donors.

Web sites should also deliver personalized information to living liver donor candidates in such a way that the format is flexible (ie, voiceover narration versus readable text versus graphics) and the information is as granular as they wish. Although it may appear contradictory to advocate for both standardized and personalized information, the 2 approaches fit hand in hand: standardization can provide the minimum essential information that all prospective living liver donors need to receive, and personalization enables choice in the depth of content. Other standardized educational Web sites are currently under development and are being designed to increase knowledge about living kidney donation in the Hispanic community [Health Resources and Services Administration award R39OT22059-01-00 to E.J.G. (principal investigator)]. Because living liver donation is a complex operation with notable risks to the donor that is performed in the face of life and death decisions for the recipient, it is incumbent on transplant centers and transplant clinicians to leverage current technological advances to optimize informed consent for prospective living liver donors.

Elisa J. Gordon Ph.D., M.P.H.* †, Daniela P. Ladner M.D., M.P.H.* †, Talia Baker M.D.†, * Institute for Healthcare Studies, Northwestern University Transplant Outcomes Research Collaborative, Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, ILand, † Department of Surgery Division of Organ Transplantation, Comprehensive Transplant Center, Northwestern University Transplant Outcomes Research Collaborative (NUTORC), Feinberg School of Medicine Northwestern University, Chicago, IL.

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