Living Donor Navigator Program and Access to Living-donor Kidney Transplantation

Kidney transplant, the gold standard for treatment of end-stage renal disease, is associated with significantly improved long-term outcomes. In addition, there is a significant survival benefit associated with living-donor kidney transplant compared with deceased-donor transplantation. However, despite those benefits, living-donor kidney transplant has declined in the United States since 2004. According to Jayme E. Locke, MD, and colleagues, there are multiple factors contributing to the decline.

Results from a National Kidney Foundation survey found that one in four Americans would consider living kidney donation if they knew someone who needed a kidney; in a Mayo Clinic survey, 84% of respondents would donate to a friend or family member and 49% said they would donate to a complete stranger. Those results suggest that potential donors may not be aware that they are needed, highlighting the lack of knowledge among transplant candidates regarding how to ask someone to donate.

Programs designed to separate the advocacy role from the transplant candidate include the Johns Hopkins Live Donor Champion Program and Smartphone app, the Boston-based House Calls Program, and the Northwestern website, Infórmate. These programs have generated interest in living-donor transplant, yet gains in actual approved donors and subsequent living-donor kidney transplantation have been modest.

Dr. Locke and colleagues at the University of Alabama at Birmingham (UAB) developed and implemented the Living Donor Navigator (LDN) Program. To evaluate the impact of the program, the researchers recently conducted a retrospective cohort study. Results of the study were reported in Transplantation [2020;194(1):122-129].

The LDN program combines advocacy training adapted from the Johns Hopkins Live Donor Champion program with the systems training of the Patient Navigator Program developed at UAB to address factors related to transplant candidates as well as potential donors. The advocacy and systems training components are delivered by lay navigators from the local community. The program was available to all patients evaluated for kidney transplant beginning in February 2017.

The advocacy training component paired transplant candidates with a live donor advocate to combine education, advocacy, and instrumental support. The program included four educational sessions offered two weeks apart. The sessions incorporated didactic as well as hands-on interactive lessons taught by trained living donor navigators.

The systems training component was designed to educate potential donors on the details associated with testing and physician visits required during the evaluation process. Potential donors who completed initial screening and were scheduled for evaluation were contacted by the living donor navigators who provided the potential donors with additional resources. Telephone and email contact between the navigators and potential donors was frequent and included reminders about physician and testing appointments. The navigators also greeted the potential donors at the transplant center and guided them through the large academic medical systems at UAB, providing concierge style service at their physician visits.

The study population included 2099 adult patients evaluated at UAB for kidney-only transplant between January 1, 2016, and March 1, 2018. Following application of exclusion criteria, the potential cohort included 2004 patients. Patients evaluated in the beginning of February 2017 were approached regarding participation in the study. Of those, 111 completed an interest form and 56 of the 111 choose to participate. One hundred percent of those who declined to participate (n=55) cited distance to the transplant center as the reason.

Participants and nonparticipants were similar in age and sex. The proportion of African Americans was greater in the participant group than in the nonparticipant group (80.4% vs 63.9%; P=.06, respectively). Duration of dialysis vintage was shorter among participants than nonparticipants (0.73 years vs 1.27 years, respectively; P=.006), and participants lived closer to the UAB than nonparticipants (22 miles vs 85 miles, respectively, P<.001).

Among the 56 participants in the LDN program, there were 113 donor screenings, for a rate of 2.02 screened donors per participant. In contrast, among 1948 nonparticipants, there were 955 donor screenings, for a rate of 0.49 screened donors per nonparticipant. In unadjusted analyses, participation in the LDN program and being married were associated with increased likelihood of donor screening (hazard ratio [HR], 7.39; 95% confidence interval [CI], 4.87-11.21; P<.001 and HR, 1.75, 95% CI, 1.44-2.13; P<.001, respectively).

Following multivariate adjustment, LDN program participation remained the strongest predictor of having a living donor screened; program participation increased the likelihood more than 9-fold compared with standard of care (adjusted HR [aHR], 9.27; 95% CI, 5.97-14.41; P<.001). The finding persisted independent of race: African Americans in the LDN program were 8-fold more likely to have a donor screened compared with African American nonparticipants (aHR, 8.47; 95% CI, 5.05-14.20; P<.001) and 3-fold more likely than white nonparticipants (aHR, 3.20; 95% CI, 1.90-5.38; P<.001).

Among the 56 program participants, nine living donors were approved to donate, for an approval rate of 16.1%; in contrast, among 1948 nonparticipants, 100 living donors were approved, for an approval rate of 5.1%. In unadjusted analyses, there were associations between LDN program participation (HR, 4.62; 95% CI, 2.33-9.26; P<.001), male sex (HR, 1.81; 95% CI, 1.19-2.74; P=.005), and being married (HR, 2.88; 95% CI, 1.88-4.42; P<.001) and increased likelihood of donor approval. There was also an association between increased dialysis vintage and decreased likelihood of donor approval (HR, 0.72; 95% CI, 0.54-0.95; P=.02).

Following multivariate adjustment, the strongest predictor of living donor approval was participation in the LDN program: program participation increased the likelihood of donor approval more than 7-fold compared with standard of care (aHR, 7.74; 95% CI, 3.54-16.93; P<.001). This finding persisted independent of race: African American participants were 8-fold more likely to have a donor approved than African American nonparticipants (aHR, 8.24; 95% CI, 3.05-22.27; P<.001).

Limitations to the findings cited by the authors included the single center design conducted in the rural, deep South, potentially limiting the generalizability to centers in other regions; the need for program participants to travel to the transplant center to participate in the advocacy training; and the lack of prospectively collected data that may have informed the results.

In conclusion, the researchers said, “The UAB LDN program is highly effective and has tremendous reach. It is the first program designed to promote living-donor kidney transplantation that has demonstrated sustained increases in both donor screenings and approvals, and, importantly, has proven effective among African Americans. This first-of-its-kind program has tremendous promise for mitigating disparities in access to living-donor kidney transplantation among African Americans. Future work designed to overcome geographic limitations in participation is needed, but in the setting of modern technology, geography is likely easily overcome with the advent of a telehealth approach to the UAB LDN model.”

Takeaway Points

  1. Researchers at the University of Alabama at Birmingham reported results of a program designed to promote advocacy and systems training among kidney transplant candidates and their potential living donors.
  2. There were 56 participants in the Living Donor Navigator (LDN) Program and 1948 nonparticipants (standard of care).
  3. Participation in the LDN program was associated with a 7-fold increase in the likelihood of living donor screenings and a 7-fold increase in the likelihood of having an approved living donor.