title: Informed consent and decision-making about adult-to-adult living donor liver transplantation: a systematic review of empirical research.
abstract: Adult-to-adult living donor liver transplantation (LDLT) is a complex procedure that poses serious health risks to and provides no direct health benefit for the donor. Because of this uneven risk-benefit ratio, ensuring donor autonomy through informed consent is critical. To assess the current knowledge pertaining to informed consent for LDLT, we conducted a systematic review of the empirical literature on donors' decision-making process, comprehension about risks and outcomes, and information needs for LDLT. Of the 1423 identified articles, 24 met final review criteria, representing the perspective of approximately 2789 potential and actual donors. As donors' decisions to donate often occur before evaluation, they often make uninformed decisions. The review found that 88% to 95% of donors reported understanding information clinicians disclosed about risks and benefits. However, donors reported unmet information needs, knowledge gaps regarding risks, and unanticipated complications. Few donors reported feeling pressure to donate. Most studies were limited by cultural differences, small sample sizes, inconsistent measures, and poor methodological approaches. This systematic review suggests that informed consent for LDLT is sub-optimal as donors do not adequately appreciate disclosed information during the informed consent process, despite United Network for Organ Sharing/CMS regulations requiring formal psychological evaluation of donor candidates. Interventions are needed to improve donor-clinician communication during the LDLT informed consent process such as through the use of comprehension assessment tools and e-health educational tools that leverage adult learning theory to effectively convey LDLT outcome data.
authors.forename: Elisa J
authors.initials: EJ
authors.lastname: Gordon
authors.forename: Amna
authors.initials: A
authors.lastname: Daud
authors.forename: Juan Carlos
authors.initials: JC
authors.lastname: Caicedo
authors.forename: Kenzie A
authors.initials: KA
authors.lastname: Cameron
authors.forename: Colleen
authors.initials: C
authors.lastname: Jay
authors.forename: Jonathan
authors.initials: J
authors.lastname: Fryer
authors.forename: Nicole
authors.initials: N
authors.lastname: Beauvais
authors.forename: Anton
authors.initials: A
authors.lastname: Skaro
authors.forename: Talia
authors.initials: T
authors.lastname: Baker
mesh_terms: D000328:Adult; D003657:Decision Making; D036262:Empirical Research; D006801:Humans; D007258:Informed Consent / Q000523:psychology; D016031:Liver Transplantation / Q000941:ethics / Q000523:psychology; D019520:Living Donors / Q000523:psychology; D010353:Patient Education as Topic; D018570:Risk Assessment