Enhanced Advocacy and Health Systems Training Through Patient Navigation Increases Access to Living-donor Kidney Transplantation.

BACKGROUND: To date, no living donation program has simultaneously addressed the needs of both transplant candidates and living donors by separating the advocacy role from the candidate and improving potential donor comfort with the evaluation process. We hypothesized that the development of a novel program designed to promote both advocacy and systems training among transplant candidates and their potential living kidney donors would result in sustained increases in living-donor kidney transplantation (LDKT). To this end, we developed and implemented a Living Donor Navigator (LDN) Program at the University of Alabama at Birmingham. METHODS: We included adult patients awaiting kidney-only transplant in a retrospective cohort analysis. Using time-varying Cox proportional hazards regression, we explored likelihood of living donor screening and approval by participation in the LDN program. RESULTS: There were 56 LDN participants and 1948 nonparticipants (standard of care). LDN was associated with a 9-fold increased likelihood of living donor screenings (adjusted hazard ratio, 9.27; 95% confidence interval, 5.97-14.41, P < 0.001) and a 7-fold increased likelihood of having an approved living donor (adjusted hazard ratio, 7.74; 95% confidence interval, 3.54-16.93; P < 0.001) compared with the standard of care. Analyses by participant race demonstrated higher likelihood of screened donors and a similar likelihood of having an approved donor among African Americans compared with Caucasians. CONCLUSIONS: These data suggest that both advocacy and systems training are needed to increase actual LDKT rates, and that LDN programs may mitigate existing racial disparities in access to LDKT.

A Qualitative Assessment of the Living Donor Navigator Program to Identify Core Competencies and Promising Practices for Implementation.

INTRODUCTION: The best strategy to increase awareness of and access to living kidney donation remains unknown. To build upon the existing strategies, we developed the Living Donor Navigator program, combining advocacy training of patient advocates with enhanced health-care systems training of patient navigators to address potential living donor concerns during the evaluation process. Herein, we describe a systematic assessment of the delivery and content of the program through focus group discussion. METHODS: We conducted focus groups with 9 advocate participants in the Living Donor Navigator program to identify knowledge, skills, and abilities needed for both advocates and navigators. We focused on 2 organizational levels: (1) the participant level or the advocacy training of the advocates and (2) the programmatic level or the support role provided by the navigators and administration of the program. FINDINGS: From 4 common themes (communication, education, support, and commitment), we identified several core competencies and promising practices, at both the participant and programmatic levels. These themes highlighted the potential for several improvements of program content and delivery, the importance of cultural sensitivity among the Living Donor navigators, and the opportunity for informal caregiver support and accountability provided by the program. DISCUSSION: These competencies and promising practices represent actionable strategies for content refinement, optimal training of advocates, and engagement of potential living donors through the Living Donor Navigator program. These findings may also assist with program implementation at other transplant centers in the future.

African American organ donor registration: a mixed methods design using the theory of planned behavior.

CONTEXT: A large racial disparity exists in organ donation. OBJECTIVE: To identify factors associated with becoming a registered organ donor among African Americans in Alabama. METHODS: Concurrent mixed methods design guided by the Theory of Planned Behavior to analyze African Americans' decisions to become a registered organ donor by using both qualitative (focus groups) and quantitative (survey) methods. RESULTS: The sample consisted of 22 registered organ donors and 65 non registered participants from 6 focus groups completed in urban (n = 3) and rural (n = 3) areas. Participants emphasized the importance of the autonomy to make one's own organ donation decision and have this decision honored posthumously. One novel barrier to becoming a registered organ donor was the perception that organs from African Americans were often unusable because of the high prevalence of chronic medical conditions such as diabetes and hypertension. Another novel theme discussed as an advantage to becoming a donor was the subsequent motivation to take responsibility for one's health. Family and friends were the most common groups of persons identified as approving and disapproving of the decision to become a donor. The most common facilitator to becoming a donor was information, whereas fear and the lack of information were the most common barriers. In contrast, religious beliefs, mistrust, and social justice themes were infrequently referenced as barriers to becoming a donor. CONCLUSION: Findings from this study may be useful for prioritizing organ donation community-based educational interventions in campaigns to increase donor registration.