Prospective pilot study of living kidney donor decision-making and outcomes.

In its recent report on organ donation, the Institute of Medicine has recommended rigorous studies of how living organ donors make the decision to donate. In this pilot study, 65 donor applicants were interviewed while being evaluated in the outpatient donor clinic and 20 were surveyed again three months after donation. Fifteen and six of these subjects were surveyed again in six and 12 months respectively. Several strategies for retaining donors in a prospective longitudinal study are discussed. Half of the donors indicated that the decision to donate was a shared family decision. Married donors were slightly more likely than non-married donors to involve another family member in this decision. Several donors made practical recommendations for improved education of donors during what many perceived to be a very lengthy evaluation process. Some subjects recommended more discussion about post-operative pain and the expected pace of recovery after discharge. Others spoke of the challenge of completing basic homemaking tasks when the donor and recipient were in the same nuclear family. We are continuing to explore these and other aspects of donor decision-making and outcomes and have expanded our sample to include non-donors in the post-evaluation period.