Live liver donors' information needs: A qualitative study of practical implications for informed consent.
As live donor liver transplantation is increasingly used to expand the donor pool, concerns remain regarding how best to obtain live liver donors' informed consent. This study assessed donors' information preferences and their perceptions of informed consent.



Cognitive interviews were conducted with donors by telephone about how knowledge items in a new survey instrument were material to informed consent, between November 2011 and April 2012. Thematic analysis was used to analyze qualitative data until reaching saturation.



Twenty-nine liver donors participated (85% participation). Donors commonly reported being unable to understand or retain much information disclosed during education. Donors preferred information about major donation risks, eg, death and minor risks that would likely affect their daily lives, eg, wound infection. Donors expressed less interest in information about their rights, confidentiality, or the medical procedure itself. Donors' preferences varied regarding statistical information. Many perceived the disclosure of risk information to be excessive, and rationalized risks they believed to be uncommon or not serious. Donors were disappointed by the brevity of the postdonation hospital stay.



Our findings suggest that the complexity and volume of disclosed information during evaluation were difficult for donors to adequately comprehend. Donors' lack of appreciation for the seriousness of complications may undermine their ability to provide informed consent. Future research should develop effective methods of information delivery to enhance informed consent.
Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL; Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL; Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL. Electronic address: e-gordon@northwestern.edu.
Elisa J
EJ
Gordon
Department of Anthropology, University of Chicago, Chicago, IL.
Jack
J
Mullee
Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL; Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.
Anton
A
Skaro
Division of Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL.
Talia
T
Baker
D000328:Adult; D030881:Disclosure; D005260:Female; D057220:Health Literacy; D006801:Humans; D007258:Informed Consent; D016031:Liver Transplantation; D019520:Living Donors / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic; D057240:Patient Preference; D012959:Socioeconomic Factors; D009927:Tissue and Organ Procurement; D055815:Young Adult