Quantifying Risk Tolerance Among Potential Living Kidney Donors With the Donation-Specific Risk Questionnaire.

ABSTRACT Rationale & Objective Enhanced informed consent tools improve patient engagement. A novel visual aid measured potential donors’ risk tolerance to post-donation kidney failure and assessed if the closeness of the relationship to the intended recipient altered willingness to accept risk. Study Design Cross-sectional analysis of donor evaluations at the time of enrollment into a longitudinal mixed-methods study between November 2014 and February 2016. Setting & Population Three United States kidney transplant centers. English-speaking adults presenting for in-person living kidney donor evaluation. Exposure Closeness of the relationship between the potential living donor and intended recipient. Outcome Willingness to accept post-donation kidney failure. Analytical Approach The Donation-Specific Risk Questionnaire, a dot matrix visual diagram, was used to measure willingness to accept kidney failure risk. Multivariable logistic regression assessed associations between risk acceptance and data from social science instruments, which measured donors’ perceived closeness with the recipient. Qualitative data were analyzed thematically per grounded theory. Results 307 participants (response rate: 86%) completed testing. 96% indicated a willingness to accept a risk of kidney failure of 0.9% or greater. Those who were older (OR 0.98, 95% CI [0.96,0.99]), women (OR 0.54, 95% CI [0.31,0.93]), and Black (OR 0.25; 95% CI [0.08,0.76]) were less likely to be in the medium versus low willingness to accept risk group. Closeness of the relationship to the recipient was independently associated with greater risk acceptance (for every 1-point greater closeness score, ORs for being in the medium and high willingness to accept risk groups were 1.21 [95% CI, 1.03-1.41] and 2.42, 95% CI, [1.53-3.82] compared to being in the low willingness to accept risk group). With the exception of parental relationships, biological linkages were not associated with accepting higher kidney failure risk. Limitations First demonstration of visual aid that used one risk estimate of kidney failure provided to all participants. Risk estimates were not customized to different demographic groups. Conclusions Relationship closeness was independently associated with a greater willingness to accept post-donation kidney failure. Visual aids can provide transplant teams individualized donor perspectives on risk thresholds and can potentially facilitate greater patient-centered care for living donors.