Transplant Patientsʼ Concerns About Participating in Kidney Paired Exchanges.

Abstract

Transplant patients' concerns about kidney paired exchanges (KPE) may be contributing to its underutilization. We examined the KPE concerns of transplant candidates and recipients who, in the last 3 yrs in our program, had a potential donor undergo initial screening but were found to be ABO incompatible/crossmatch-positive. Patients completed the Attitudes about Kidney Exchanges - Recipients (AKE-R, 23 items, score range=23 to 92, higher scores=more KPE concerns, Cronbach's α=0.88) and the Revised Health Care System Distrust (HCSD) scale. To date, 71 patients (44 wait-listed, 27 recipients) have completed surveys, with a mean age 54.0±12 yrs, 56% female, 66% white, 56% attended college, and 38% employed. Only 21 patients (30%) expressed an interest in KPE participation when informed of the potential donor's incompatibility and 4 (6%) received a KPE kidney. The most common concerns about KPE were: not receiving a kidney after their friend or family member donates (56%), receiving a kidney of lesser quality than the intended donor (55%), the wait would be too long and disruptive to the donor's life (53%), not knowing anything about the person whose kidney would be received as part of KPE (51%), the intended donor might be uncomfortable with the idea that his/her kidney would go to someone else (50%), the intended donor might feel more pressure to go through with donation as part of KPE (45%), and the donor's costs in KPE would be too high (44%). Minorities had higher total AKE-R scores (i.e., more concerns) than white patients (59.0±9 vs. 52.4±12, t=2.3, P=0.02). Patients who did not want to pursue KPE with the incompatible potential donor had higher AKE-R scores than those who wanted to move forward with possible KPE (57.4±9 vs. 48.2±14, t=3.2, P=0.002). More KPE concerns were associated with more health care distrust (r=0.27, P=0.03). Age, gender, education, work status, donor-recipient relationship type, and perceived emotional closeness with the intended donor were not significantly associated with KPE concerns. Many patients, particularly minorities and those with higher levels of health care system distrust, have important psychological and practical concerns about KPE that may affect willingness to engage in KPE. Targeted educational approaches may help to increase KPE willingness.