Background

Transplant centers debate how to manage risks to potential living kidney donors (LKDs) when there is a lack of consensus about reasonable donor risk .We assessed LKDs perspectives on decision-making in the context of disagreements about acceptable donor risk.

Methods

Adult potential LKDs at 3 US transplant centers completed semi-structured interviews and demographic surveys before their donor eligibility was finalized. Participants were asked what they thought should happen if a LKD was willing to accept greater risks than the center was comfortable with. Open-ended responses were analyzed iteratively using grounded theory to identify emergent themes. Logistic regression assessed correlations between demographics and preferences for donor involvement in decisions.

Results

A total of 96 potential LKDs were interviewed (138 were invited; 19% declined, 11% were not interviewed before being told if they could donate); 39% were men and 87% whites. The mean age was 46 years, and 70% completed college or beyond.

Half (47%) thought an initial attempt should be made to resolve disagreements by center-LKD discussion. Should disagreement persist, participants thought a final decision about donation should be made by: centers (35%), shared decision-making (23%), LKDs if the risks fell below a certain threshold (9%), LKDs guided by center advice (7%), and LKDs alone (21%). Demographic variables, relationship to the recipient, prior LKD evaluation, and knowing another recipient or LKD were not associated with a preference for LKD involvement in decision making.

Many (29%) provided reasons both for and against a decision-making role for LKDs. Reasons supporting a center-based decision included: professional expertise (36%), emotional impartiality (21%), responsibility for donor safety (20%), and center liability (12%). Reasons supporting a donor-based decision included: donor autonomy (29%), closeness of the donor-recipient relationship (19%), the donor's ability to comprehend risks (11%), and the belief that centers were unaware of donors' values or recipients' needs (7%).

Discussion

Potential LKDs have nuanced attitudes toward risk acceptance and decision-making. Most believe they should have a say in determining the level of risk they can accept to donate. Centers should consider developing shared decision-making processes to engage LKDs in discussions about the risks of donation.

CITATION INFORMATION: Thiessen C, Gannon J, Kennedy K, Dobosz D, Li S, Gray D, Mussell A, Gordon E, Reese P, Kulkarni S. Who Should Decide? Potential Living Kidney Donor Preferences for Making Decisions About Risk. Am J Transplant. 2016;16 (suppl 3).

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