title: Informed consent for live liver donors: A qualitative, prospective study.
abstract: OBJECTIVE
  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.
authors.affiliation: Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States; Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States. Electronic address: e-gordon@northwestern.edu.
authors.forename: Elisa J
authors.initials: EJ
authors.lastname: Gordon
authors.affiliation: Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
authors.forename: Jillian
authors.initials: J
authors.lastname: Rodde
authors.affiliation: Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
authors.forename: Anton
authors.initials: A
authors.lastname: Skaro
authors.affiliation: Comprehensive Transplant Center, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.
authors.forename: Talia
authors.initials: T
authors.lastname: Baker
mesh_terms: D000293:Adolescent; D000328:Adult; D003657:Decision Making / Q000941:ethics*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007258:Informed Consent / Q000523:psychology* / Q000592:standards; D016031:Liver Transplantation / Q000523:psychology*; D019520:Living Donors / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D026684:Personal Autonomy; D011446:Prospective Studies; D058996:Quality Improvement; D055815:Young Adult
keywords: Bioethics; Education; Information needs; Informed consent; Liver transplantation; Qualitative research; Risk communication