Several themes emerged as perceived barriers to LKD. Many participants identified knowledge deficits about LKD, expressing uncertainty about the differences between LKD and deceased donation, and whether kidney disease simultaneously afflicts both kidneys. Many believed that donors experience dramatically shorter life expectancies, are unable to have children, and are more susceptible to kidney disease after donating. Recipients and donors reported that family members were involved in discussions about the donor's decision to donate, with some family members discouraging donation. Financial barriers cited included fear of becoming unable to work, losing one's job, or being unable to pay household bills while recovering. Participants also identified logistic barriers for undocumented immigrants (eg, the inability to obtain government insurance for transplant candidates and uncertainty about their eligibility to donate). Donors desired information about optimizing self-care to promote their remaining kidney's health. Culturally competent interventions are needed to redress Hispanics' knowledge deficits and misconceptions and reduce LKD disparities among Hispanics.

Non-physician transplant providers need and are interested in better education about IRD kidneys to effectively educate patients and obtain patients' informed consent.

Background As live donor liver transplantation is increasingly used to expand the donor pool, concerns remain regarding ensuring live liver donors' informed consent. This study assessed donors' information preferences and perceptions of informed consent. Methods 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. Results Twenty-nine liver donors participated (85% participation rate). Donors commonly reported being unable to understand or retain much information disclosed during education. Donors preferred information about major donation risks, e.g., death, and minor risks that would likely affect their daily lives, e.g., wound infection. Donors expressed less interest in information about their rights, confidentiality, or the medical procedure. Donors' preferences varied regarding statistical information. Many perceived the disclosure of risk information to be excessive, and rationalized risks believed to be uncommon or not serious. Donors were disappointed by the brevity of the post-donation hospital stay. Conclusions Our findings suggest that the complexity and volume of disclosed information during evaluation was 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 information delivery methods to enhance informed consent.

Adult-to-adult living liver donation is associated with considerable risks with no direct medical benefit to liver donors (LDs). Ensuring that potential LDs comprehend the risks of donation is essential to medically and ethically justify the procedure. We developed and prospectively evaluated the initial psychometrics of an "Evaluation of Donor Informed Consent Tool" (EDICT) designed to assess LDs' comprehension about the living donation process. EDICT includes 49 true/false/unsure items related to LD informed consent. Consecutive LDs undergoing evaluation at 1 academic medical center from October 2012 to September 2014 were eligible for participation in pretest/posttest interviews. Medical records were reviewed for postdonation complications. Twenty-seven LDs participated (96% participation rate). EDICT demonstrated good internal consistency reliability at pretest, 2 days before donating (Cronbach's a 5 0.78), and posttest, 1 week after donating (a 5 0.70). EDICT scores significantly increased over time (P 5 0.01) and demonstrated good test-retest reliability (r 5 0.68; P < 0.001). EDICT was associated with race/ethnicity (P 5 0.02) and relationship to the recipient (P 5 0.01; pretest), and income (P 5 0.01) and insurance (P 5 0.01; posttest), but not with decisional conflict, preoperative preparedness, satisfaction, or decisional regret (pretest and posttest). Donor complications did not impact postdonation EDICT scores. In conclusion, EDICT has promising measurement properties and may be useful in the evaluation of informed consent for potential Although more than 15,700 patients are currently waiting for a liver transplantation (LT) in the United States, only 6,400 received a LT in 2013 1 resulting in approximately 1,500 deaths from liver failure. 1 Adultto-adult living donor liver transplantation (ALDLT) is an attractive alternative treatment for liver failure given the growing shortage of deceased liver donors (LDs) for patients on the waiting list for a LT.Although living donor liver transplantation (LDLT) offers comparable recipient survival as deceased donor Additional supporting information may be found in the online version of this article.