TY - JOUR
T1 - Informed consent for live liver donors
T2 - A qualitative, prospective study
AU - Gordon, Elisa J.
AU - Rodde, Jillian
AU - Skaro, Anton
AU - Baker, Talia
N1 - Publisher Copyright:
© 2015 European Association for the Study of the Liver.
PY - 2015/10/1
Y1 - 2015/10/1
N2 - Background & Aims Adult-to-adult live donor liver transplantation (LDLT) poses serious health risks and no direct health benefits to donors. Ensuring live donors' autonomy through informed consent is critical. We assessed live liver donors' (LD) comprehension, information needs, risk perceptions, and demographics. Methods Semi-structured interviews were prospectively conducted with LDs after completing donor evaluation and informed consent at our transplant center. Likert scales measured informed consent domains. Open-ended responses underwent thematic analysis. Results Thirty LDs participated (100% participation rate). Although 90% of LDs reported being informed about donation 'a great deal', only 66% reported understanding information about donation 'a great deal.' Many (40%) reported difficulty understanding medical terminology. Information LDs most desired to feel comfortable with their decision included: incidence and type of donor complications (67%), description of donation procedure (57%), and the process of donor preparation (43%). Most (83%) LDs rated risks to themselves as 'not at all' to 'somewhat' risky, and minimized these risks. Conclusions Although LDs perceived that they were adequately informed, their actual comprehension about donation was inadequate. Findings suggest the value of informed consent for preparation for the procedure and potential periprocedural risks rather than for decision-making. More comprehensible information disclosure may optimize informed consent.
AB - Background & Aims Adult-to-adult live donor liver transplantation (LDLT) poses serious health risks and no direct health benefits to donors. Ensuring live donors' autonomy through informed consent is critical. We assessed live liver donors' (LD) comprehension, information needs, risk perceptions, and demographics. Methods Semi-structured interviews were prospectively conducted with LDs after completing donor evaluation and informed consent at our transplant center. Likert scales measured informed consent domains. Open-ended responses underwent thematic analysis. Results Thirty LDs participated (100% participation rate). Although 90% of LDs reported being informed about donation 'a great deal', only 66% reported understanding information about donation 'a great deal.' Many (40%) reported difficulty understanding medical terminology. Information LDs most desired to feel comfortable with their decision included: incidence and type of donor complications (67%), description of donation procedure (57%), and the process of donor preparation (43%). Most (83%) LDs rated risks to themselves as 'not at all' to 'somewhat' risky, and minimized these risks. Conclusions Although LDs perceived that they were adequately informed, their actual comprehension about donation was inadequate. Findings suggest the value of informed consent for preparation for the procedure and potential periprocedural risks rather than for decision-making. More comprehensible information disclosure may optimize informed consent.
KW - Bioethics
KW - Education
KW - Information needs
KW - Informed consent
KW - Liver transplantation
KW - Qualitative research
KW - Risk communication
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U2 - 10.1016/j.jhep.2015.05.003
DO - 10.1016/j.jhep.2015.05.003
M3 - Article
C2 - 26003265
AN - SCOPUS:84941943926
VL - 63
SP - 838
EP - 847
JO - Journal of Hepatology
JF - Journal of Hepatology
SN - 0168-8278
IS - 4
ER -