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

Abstract

Rationale & objective: Enhanced informed consent tools improve patient engagement. A novel visual aid measured potential donors' risk tolerance to postdonation 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 & participants: Three US 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 postdonation kidney failure.

Analytical approach: The Donor-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, odds ratios 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 with 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 postdonation kidney failure. Visual aids can provide transplant teams with individualized donor perspectives on risk thresholds and can potentially facilitate greater patient-centered care for living donors.

Keywords: Donor evaluation; donor-recipient relationship; end-stage renal disease (ESRD); informed consent tool kidney transplantation; living kidney donation; medical decision making; patient communication; patient-centered care; renal failure; risk acceptance; transplant ethics; visual aid.