Purpose

To assess how potential living kidney donors (LKDs) perceived support from the transplant team and areas for improvement.

Methods

We conducted a prospective, longitudinal study of individuals who underwent LKD evaluation at 3 US centers. Participants completed semi-structured interviews at 3 time points about the support they received from the transplant team throughout the evaluation and donation process, and of how the center could have enhanced support. We present data from the third time point, six months after donation, notification of ineligibility, opting out, or decision not to donate for other reasons. Interviews were thematically coded to elucidate participants' perceptions about the support offered by their center. Chi-squared tests assessed correlations between participant characteristics and perceptions of support.

Results

Of 113 participants, 75 were donors, 27 were medically ineligible, 4 opted out of donation, and 7 did not donate for another reason. Most were female (58%) and white (91%), with a mean age of 44 years. While most (84%) said they felt supported, 12% did not feel adequately supported, and 4% did not need support. LKD race, gender, donor eligibility status, and study site were not correlated with perceptions of support.

36% of participants had at least one major complaint regarding the center's support. The most common concerns were poor communication (14%), feeling ignored (11%), being wrongfully billed for testing (7%), and poor bedside manner of the team (6%). One donor shared, “I called [my advocate] she never ever called back. And once I had surgery she never talked to me again, so that was a little disappointing.” Some stated that transplant centers should offer more follow-up care (18%) and continuity of care providers (5%). One ineligible participant reported, “I felt I could use more support in terms of both my emotional response to not being able to donate[hellip]I have a medical issue, they provided me absolutely no support in finding a urologist.” Others sought clarification about the evaluation timeline (4%): “So I didn't know for most of the process, how far along was I? Was I half way, three-quarters? Were we one decision away?”

Conclusions

While most donors felt well supported, a third of potential LKDs had at least one major complaint about the support offered by their center. Our findings can guide improvements in the care of potential LKDs.

CITATION INFORMATION: Dobosz D, Thiessen C, Li S, Yu K, Gannon J, Kennedy K, Gray D, Mussell A, Reese P, Gordon E, Kulkarni S. Optimizing Support for Living Kidney Donors: Insights from a Prospective Study. Am J Transplant. 2017;17 (suppl 3).

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