People with HIV at the end-of-life and their next-of-kin/loved ones are willing to participate in interventional HIV cure-related research.

INTRODUCTION: The Last Gift study at the University of California San Diego (UCSD), United States enrolls terminally ill people with HIV (PWH) in HIV cure research. METHODS: From 2017 to 2022, we conducted surveys with Last Gift participants and their next-of-kin/loved ones to evaluate willingness to participate in different types of HIV cure research at the end of life (EOL). We analyzed willingness data descriptively. RESULTS: We surveyed 17 Last Gift participants and 17 next-of-kin/loved ones. More than half of Last Gift participants ( n  = 10; 58.8%) expressed willingness to participate in studies involving totally new treatments or approaches ('first-in-human' studies), a combination of different approaches, the use of unique antibodies, proteins or molecules, or therapeutic vaccines. Under one-quarter of Last Gift participants ( n  = 4; 23.5%) expressed willingness to participate in research involving interventions that may shorten their life expectancy to benefit medical research. Most Last Gift participants and their next-of-kin/loved ones also expressed high acceptance for various types of donations and biopsies at the EOL (e.g. hair donations and skin, lymph node or gut biopsies). DISCUSSION: Knowing whether people would be willing to participate in different types of EOL HIV cure research can help inform the design of future innovative studies. As a research community, we have a duty to design studies with adequate safeguards to preserve the public trust in research and honor PWH's important gift to humanity.

Quantifying the association of individual-level characteristics with disparities in kidney transplant waitlist addition among people with HIV.

BACKGROUND: Over 45% of people with HIV (PWH) in the United States at least 50 years old and are at heightened risk of aging-related comorbidities including end-stage kidney disease (ESKD), for which kidney transplant is the optimal treatment. Among ESKD patients, PWH have lower likelihood of waitlisting, a requisite step in the transplant process, than individuals without HIV. It is unknown what proportion of the inequity by HIV status can be explained by demographics, medical characteristics, substance use history, and geography. METHODS: The United States Renal Data System, a national database of all individuals ESKD, was used to create a cohort of people with and without HIV through Medicare claims linkage (2007-2017). The primary outcome was waitlisting. Inverse odds ratio weighting was conducted to assess what proportion of the disparity by HIV status could be explained by individual characteristics. RESULTS: Six thousand two hundred and fifty PWH were significantly younger at ESKD diagnosis and more commonly Black with fewer comorbidities. PWH were more frequently characterized as using tobacco, alcohol and drugs. Positive HIV-status was associated with 57% lower likelihood of waitlisting [adjusted hazard ratio (aHR): 0.43, 95% confidence interval (CI): 0.46-0.48, P  < 0.001]. Controlling for demographics, medical characteristics, substance use and geography explained 39.8% of this observed disparity (aHR: 0.69, 95% CI: 0.59-0.79, P  < 0.001). CONCLUSION: PWH were significantly less likely to be waitlisted, and 60.2% of that disparity remained unexplained. HIV characteristics such as CD4 + counts, viral loads, antiretroviral therapy adherence, as well as patient preferences and provider decision-making warrant further study.

Racial Disparities in Access to the Kidney Transplant Waitlist Among People with Human Immunodeficiency Virus.

The epidemiology of human immunodeficiency virus (HIV) has shifted such that Black individuals disproportionately represent incident HIV diagnoses. While risk of end-stage kidney disease (ESKD) among people with HIV (PWH) has declined with effective antiretroviral therapies, a substantial racial disparity in ESKD burden exists with the greatest prevalence among Black PWH. Disparities in waitlisting for kidney transplantation, the optimal treatment for ESKD, exist for both PWH and Black individuals without HIV, but it is unknown whether these characteristics together exacerbate such disparities. Six hundred two thousand six ESKD patients were identified from the United States Renal Data System (January 1, 2007 to December 31, 2017), and HIV-status was determined through Medicare claims. Cox proportional hazards regression was used to determine waitlisting rates. Multiplicative interaction terms between HIV-status and race were examined. The 6250 PWH were significantly younger, more commonly Black, and less commonly female than those without HIV. HIV-status and race were independently associated with 50% and 12% lower likelihood of waitlisting, respectively [adjusted hazard ratio (aHR): 0.50, 95% confidence interval (CI): 0.36-0.69, p < 0.001; aHR: 0.88, 95% CI: 0.87-0.90, p < 0.001]. There was also a significant interaction present between HIV-status and Black race (aHR: 0.80, 95% CI: 0.66-0.98, p < 0.001) such that, while HIV-status and Black race were independently associated with decreased waitlisting, the interaction of Black race and HIV-status exacerbated those disparities. While limited by lack of HIV-specific data that may impact inferences with respect to race, additional studies are urgently needed to understand the interplay between HIV risk factors, HIV-stigma, and racism, and how intersectionality may exacerbate disparities in transplantation among PWH.

African American/Black race, apolipoprotein L1 , and serum creatinine among persons with HIV.

OBJECTIVE: Accurate estimation of kidney function is critical among persons with HIV (PWH) to avoid under-dosing of antiretroviral therapies and ensure timely referral for kidney transplantation. Existing estimation equations for kidney function include race, the appropriateness of which has been debated. Given advancements in understanding of race and the necessity of accuracy in kidney function estimation, this study aimed to examine whether race, or genetic factors, improved prediction of serum creatinine among PWH. DESIGN: This cross-sectional study utilized data from the Center for AIDS Research Network of Integrated Clinical Systems cohort (2008-2018). The outcome was baseline serum creatinine. METHODS: Ordinary least squares regression was used to examine whether inclusion of race or genetic factors [ apolipoprotein-L1 ( APOL1 ) variants and genetic African ancestry] improved serum creatinine prediction. A reduction in root mean squared error (RMSE) greater than 2% was a clinically relevant improvement in predictive ability. RESULTS: There were 4183 PWH included. Among PWH whose serum creatinine was less than 1.7 mg/dl, race was significantly associated with serum creatinine ( ß â€Š= 0.06, SE = 0.01, P  < 0.001) but did not improve predictive ability. African ancestry and APOL1 variants similarly failed to improve predictive ability. Whereas, when serum creatinine was at least 1.7 mg/dl, inclusion of race reduced the RMSE by 2.1%, indicating improvement in predictive ability. APOL1 variants further improved predictive ability by reducing the RMSE by 2.9%. CONCLUSION: These data suggest that, among PWH, inclusion of race or genetic factors may only be warranted at higher serum creatinine levels. Work eliminating existing healthcare disparities while preserving the utility of estimating equations is needed.

Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States.

Introduction: Although current antiretroviral therapy allows most people with HIV (PWH) to experience normal longevity with a good quality of life, an HIV cure remains elusive due to HIV reservoir formation within deep tissues. An HIV cure remains highly desirable to the community of PWH. This study reports on the perceived risks and benefits of participation in the Last Gift study, a study aimed at characterizing HIV reservoirs via post-mortem autopsy, among PWH at the end of life (EOL) and their next-of-kin (NOK)/loved ones. Methods: Last Gift participants (PWH with a terminal illness and/or near the end of life) and their NOK/loved ones were surveyed for perceptions of risks, benefits, and meaning for participation in the Last Gift study. Results: The average age of the 17 Last Gift participants was 66.6 years, 3 were females, 1 person identified as Hispanic, and 15 as Caucasian. The average age of the 17 NOK/loved ones was 56.7 years, and relationships to Last Gift participants included partner/spouse, sibling, friend, child, parent, grandparent, and nephew. The only perceived personal risk of the Last Gift among participants was the blood draws (3/17). NOK/loved ones perceived the following risks: blood draws (2/17), physical pain (3/17), worry that something bad will happen (2/17), and unpleasant side effects (1/17). Participants in Last Gift and NOK/loved ones indicated the study had various positive social effects. For both participants and NOK/loved ones, the most frequent perceived personal benefit of the Last Gift was the satisfaction of supporting HIV cure research. Discussion: Participants perceived minimal personal and societal risks and valued the altruistic benefits of participating in the Last Gift study. Last Gift participants and NOK/loved ones were cautious about possible personal risks of EOL HIV cure research but still viewed that the emotional, psychological and societal benefits of participation outweighed potential risks.

Estimates of short sleep duration among US rural and urban women with prediabetes.

BACKGROUND: Short sleep duration (SSD) (<7 hours/night) is linked with increased risk of prediabetes to diabetes progression. Despite a high diabetes burden in US rural women, existing research does not provide SSD estimates for this population. METHODS: We used national Behavioral Risk Factor Surveillance System surveys to conduct a cross-sectional study examining SSD estimates for US women with prediabetes by rural/urban residence between 2016-2020. We applied logistic regression models to the BRFSS dataset to ascertain associations between rural/urban residence status and SSD prior to and following adjustment for sociodemographic factors (age, race, education, income, health care coverage, having a personal doctor). RESULTS: Our study included 20,997 women with prediabetes (33.7% rural). SSD prevalence was similar between rural (35.5%, 95% CI: 33.0%-38.0%) and urban women (35.4%, 95% CI: 33.7%-37.1). Rural residence was not associated with SSD among US women with prediabetes prior to adjustment (Odds Ratio: 1.00, 95% CI: 0.87-1.14) or following adjustment for sociodemographic factors (Adjusted Odds Ratio: 1.06, 95% CI: 0.92-1.22). Among women with prediabetes, irrespective of rural/urban residence status, being Black, aged <65 years, and earning <$50,000 was linked with significantly higher odds of having SSD. CONCLUSIONS: Despite the finding that SSD estimates among women with prediabetes did not vary by rural/urban residence status, 35% of rural women with prediabetes had SSD. Efforts to reduce diabetes burden in rural areas may benefit from incorporating strategies to improve sleep duration along with other known diabetes risk factors among rural women with prediabetes from certain sociodemographic backgrounds.

Reclassification of CKD in living kidney donors with the refitted race-free eGFR formula.

BACKGROUND: Chronic Kidney Disease (CKD) Epidemiology Collaboration eGFR 2021 formula removed Black race from the 2009 equation. Unintended consequences may lead to reclassifying Black living kidney donors as having more advanced CKD, exacerbating racial disparities in living donation. METHODS: We used national data to quantify CKD stage reclassification based on eGFR for Black living donors both pre- and post-donation. RESULTS: Among 6365 Black living donors, 17.7% were reclassified as having a higher CKD stage pre-donation with the 2021 formula. Among 4149 Black living donors with at least 2 creatinine measurements post-donation, 25.5% were reclassified as having a higher CKD stage post-donation with the 2021 formula. CONCLUSION: Eliminating race in the formula may inappropriately label Black potential donors with CKD. These data highlight the need for a validated eGFR formula for donors, use of measured and not eGFR, and education of non-transplant providers regarding interpretation of CKD staging in living donation.

Associations between female birth sex and risk of chronic kidney disease development among people with HIV in the USA: A longitudinal, multicentre, cohort study.

Background: Women represent a meaningful proportion of new HIV diagnoses, with Black women comprising 58% of new diagnoses among women. As HIV infection also increases risk of chronic kidney disease (CKD), understanding CKD risk among women with HIV (WWH), particularly Black women, is critical. Methods: In this longitudinal cohort study of people with HIV (PWH) enrolled in CFAR Network of Integrated Clinical Systems (CNICS), a multicentre study comprised of eight academic medical centres across the United States from Jan 01, 1996 and Nov 01, 2019, adult PWH were excluded if they had ≤2 serum creatinine measurements, developed CKD prior to enrollment, or identified as intersex or transgendered, leaving a final cohort of 33,998 PWH. The outcome was CKD development, defined as estimated glomerular filtration rate (eGFR) <60 mL/min/1·73 m2 calculated using the CKD-EPI equation, for ≥90 days with no intervening higher values. Findings: Adjusting for demographic and clinical characteristics, WWH were 61% more likely to develop CKD than men (adjusted hazard ratio [aHR]: 1·61, 95% CI: 1·46-1·78, p<0·001). This difference persisted after further adjustment for APOL1 risk variants (aHR female sex: 1·92, 95% CI: 1·63-2·26, p<0·001) and substance abuse (aHR female sex: 1·70, 95% CI: 1·54-1·87, p<0·001). Interpretation: WWH experienced increased risk of CKD. Given disparities in care among patients with end-stage kidney disease, efforts to engage WWH in nephrology care to improve chronic disease management are critical. Funding: US National Institutes of Health.

Greater community vulnerability is associated with poor living donor navigator program fidelity.

BACKGROUND: Community-level factors contribute to living donor kidney transplantation disparities but may also influence the interventions aimed to mitigate these disparities. The Living Donor Navigator Program was designed to separate the advocacy role from the patient in need of transplantation-friends/family are encouraged to participate as the patients' advocates to identify living donors, though some of the patients participate alone as self-advocates. Self-advocates have a lower living donor kidney transplantation likelihood compared to the patients with an advocate. We sought to evaluate the relationship between the patients' community-level vulnerability and living donor navigator self-advocacy as a surrogate for program fidelity. METHODS: This single-center, retrospective study included 110 Living Donor Navigator participants (April 2017-June 2019). Program fidelity was assessed using the participants' advocacy status. Measures of community vulnerability were obtained from the Centers for Disease Control and Prevention Social Vulnerability Index. Modified Poisson regression was used to evaluate the association between community-level vulnerability and living donor navigator self-advocacy. RESULTS: Of the 110 participants, 19% (n = 21) were self-advocates. For every 10% increase in community-level vulnerability, patients had 17% higher risk of self-advocacy (adjusted relative risk 1.17, 95% confidence interval: 1.03-1.32, P = .01). Living in areas with greater unemployment (adjusted relative risk: 1.18, 95% confidence interval: 1.04-1.33, P = .01), single-parent households (adjusted relative risk: 1.23, 95% confidence interval: 1.06-1.42, P = .006), minority population (adjusted relative risk: 1.30, 95% confidence interval: 1.04-1.55, P = .02), or no-vehicle households (adjusted relative risk: 1.17, 95% confidence interval: 1.02-1.35, P = .02) were associated with increased risk of self-advocacy. CONCLUSION: Having a greater community-level vulnerability was associated with poor Living Donor Navigator Program fidelity. The potential barriers identified using the Social Vulnerability Index may direct resource allocation and program refinement to optimize program fidelity and efficacy for all participants.

Efficacy of hope: Analysis of organ quality and availability among deceased HIV-positive donors.

BACKGROUND: Improved survival among people with human immunodeficiency virus (HIV) (PWH) has led to increased organ failure, necessitating transplantation. In 2013, the HIV Organ Policy Equity (HOPE) Act was passed, allowing PWH to donate organs to other PWH. No study has assessed organ quality and quantity among a national pool of PWH. METHODS: CFAR Network of Integrated Clinical Systems (CNICS), a multicenter study capturing data on PWH, was used to identify 6504 deaths from 1999 to 2018. Exclusions included cause of death, chronic kidney disease, fibrosis-4 score ≥ 3.25, and opportunistic infection at the time of death. Donor quality was defined by HIV viremia and the kidney donor profile index (KDPI). The CDC Wonder database, which contains national death data, permitted the estimation of deaths among PWH nationally from 1999 to 2018. Assuming CNICS was representative of PWH nationally, percentages of potential donors were applied to the CDC Wonder cohort. RESULTS: Within CNICS, there were 3241 (65.9%) potential kidney donors and 3536 (71.9%) potential liver donors from 1999 to 2018. Based on viremia and KDPI, 821 were lower-risk kidney donors (16.7%) and 1206 (24.5%) were lower-risk liver donors. Within CDC Wonder, we identified 12 048 potential donors from 1999 to 2018. Extrapolating from CNICS to the national cohort suggested 396 kidney donors (792 kidneys) and 433 liver donors annually, with 100 kidney donors (200 kidneys) and 147 livers being lower-risk. CONCLUSION: A substantial number of PWH meet donation criteria, a valuable source of organs for PWH in need of transplants. Our estimates suggest there may be more available organs from PWH than current transplant numbers indicate.

Evaluation of Community-Level Vulnerability and Racial Disparities in Living Donor Kidney Transplant.

Importance: Living donor kidney transplant (LDKT) is the ideal treatment for end-stage kidney disease, but racial disparities in LDKT have increased over the last 2 decades. Recipient clinical and social factors do not account for LDKT racial inequities, although comprehensive measures of community-level vulnerability have not been assessed. Objective: To determine if racial disparities persist in LDKT independent of community-level vulnerability. Design, Setting, and Participants: This retrospective, multicenter, cross-sectional study included data from 19 287 adult kidney-only transplant recipients in the Scientific Registry of Transplant Recipients. The study included individuals who underwent transplant between January 1 and December 31, 2018. Exposures: Recipient race and the 2018 US Centers for Disease Control and Prevention Social Vulnerability Index (SVI). Census tract-level SVI data were linked to census tracts within each recipient zip code. The median SVI measure among the census tracts within a zip code was used to describe community-level vulnerability. Main Outcomes and Measures: Kidney transplant donor type (deceased vs living). Modified Poisson regression was used to evaluate the association between SVI and LDKT, and to estimate LDKT likelihood among races, independent of community-level vulnerability and recipient-level characteristics. Results: Among 19 287 kidney transplant recipients, 6080 (32%) received LDKT. A total of 11 582 (60%) were male, and the median (interquartile range) age was 54 (43-63) years. There were 760 Black LDKT recipients (13%), 4865 White LDKT recipients (80%), and 455 LDKT recipients of other races (7%; American Indian, Asian, multiracial, and Pacific Islander). Recipients who lived in communities with higher SVI (ie, more vulnerable) had lower likelihood of LDKT compared with recipients who lived in communities with lower SVI (ie, less vulnerable) (adjusted relative risk [aRR], 0.97; 95% CI, 0.96-0.98; P < .001). Independent of community-level vulnerability, compared with White recipients, Black recipients had 37% lower likelihood (aRR, 0.63; 95% CI, 0.59-0.67; P < .001) and recipients of other races had 24% lower likelihood (aRR, 0.76; 95% CI, 0.70-0.82; P < .001) of LDKT. The interaction between SVI and race was significant among Black recipients, such that the disparity in LDKT between Black and White recipients increased with greater community-level vulnerability (ratio of aRRs, 0.67; 95% CI, 0.51-0.87; P = .003). Conclusions and Relevance: Community-level vulnerability is associated with access to LDKT but only partially explains LDKT racial disparities. The adverse effects of living in more vulnerable communities were worse for Black recipients. The interaction of these constructs is worrisome and suggests evaluation of other health system factors that may contribute to LDKT racial disparities is needed.

Obesity is a risk factor for progression to kidney transplant waitlisting after liver transplantation.

BACKGROUND: Non-alcoholic steatohepatitis has emerged as a leading cause of cirrhosis, and obesity-associated comorbidities, including renal disease, have increased in prevalence. Obesity predisposes the kidney to hyperfiltration injury, potentially impairing acute kidney injury recovery. Identification of patients at risk for renal dysfunction is impeded by poor performance of renal function estimating equations among cirrhotics. To better understand obesity among cirrhotics and renal disease progression, we examined likelihood of kidney transplantation (KT) waitlisting after liver transplant alone (LTA) by obesity class. METHODS: 68 607 LTA recipients were identified in SRTR (2005-2018). Fine and Gray competing risks models were used to analyze likelihood of KT waitlisting. RESULTS: 27.4% of recipients were obese (BMI ≥ 30 kg/m2 ) and were 10% more likely to require KT waitlisting (aHR: 1.10, 95%CI: 1.01-1.20). Risk was highest among recipients with Classes II and III obesity (BMI: ≥35 kg/m2 ) (aHR: 1.37, 95%CI: 1.17-1.56). Moreover, recipients with Classes II and III obesity were 57% more likely to require KT waitlisting within one year post-LTA (aHR: 1.57, 95%CI: 1.18-2.10) compared to non-obese recipients. DISCUSSION: These findings suggest obesity was a risk factor for renal recovery failure and/or renal disease progression post-LTA and may confound identification of renal dysfunction and/or prediction of renal recovery among cirrhotics.

Self-advocacy is associated with lower likelihood of living donor kidney transplantation.

BACKGROUND: The Living Donor Navigator (LDN) Program pairs kidney transplant candidates (TC) with a friend or family member for advocacy training to help identify donors and achieve living donor kidney transplantation (LDKT). However, some TCs participate alone as self-advocates. METHODS: In this retrospective cohort study of TCs in the LDN program (04/2017-06/2019), we evaluated the likelihood of LDKT using Cox proportional hazards regression and rate of donor screenings using ordered events conditional models by advocate type. RESULTS: Self-advocates (25/127) had lower likelihood of LDKT compared to patients with an advocate (adjusted hazard ratio (aHR): 0.22, 95% confidence interval (CI): 0.03-1.66, p = 0.14). After LDN enrollment, rate of donor screenings increased 2.5-fold for self-advocates (aHR: 2.48, 95%CI: 1.26-4.90, p = 0.009) and 3.4-fold for TCs with an advocate (aHR: 3.39, 95%CI: 2.20-5.24, p < 0.0001). CONCLUSIONS: Advocacy training was beneficial for self-advocates, but having an independent advocate may increase the likelihood of LDKT.

Quantifying Sex-Based Disparities in Liver Allocation.

Importance: Differences in local organ supply and demand have introduced geographic inequities in the Model for End-stage Liver Disease (MELD) score-based liver allocation system, prompting national debate and patient-initiated lawsuits. No study to our knowledge has quantified the sex disparities in allocation associated with clinical vs geographic characteristics. Objective: To estimate the proportion of sex disparity in wait list mortality and deceased donor liver transplant (DDLT) associated with clinical and geographic characteristics. Design, Setting, and Participants: This retrospective cohort study used adult (age ≥18 years) liver-only transplant listings reported to the Organ Procurement and Transplantation Network from June 18, 2013, through March 1, 2018. Exposure: Liver transplant waiting list. Main Outcomes and Measures: Primary outcomes included wait list mortality and DDLT. Multivariate Cox proportional hazards regression models were constructed, and inverse odds ratio weighting was used to estimate the proportion of disparity across geographic location, MELD score, and candidate anthropometric and liver measurements. Results: Among 81 357 adults wait-listed for liver transplant only, 36.1% were women (mean [SD] age, 54.7 [11.3] years; interquartile range, 49.0-63.0 years) and 63.9% were men (mean [SD] age, 55.7 [10.1] years; interquartile range, 51.0-63.0 years). Compared with men, women were 8.6% more likely to die while on the waiting list (adjusted hazard ratio [aHR], 1.11; 95% CI, 1.04-1.18) and were 14.4% less likely to receive a DDLT (aHR, 0.86; 95% CI, 0.84-0.88). In the geographic domain, organ procurement organization was the only variable that was significantly associated with increased disparity between female sex and wait list mortality (22.1% increase; aHR, 1.22; 95% CI, 1.09-1.30); no measure of the geographic domain was associated with DDLT. Laboratory and allocation MELD scores were associated with increases in disparities in wait list mortality: 1.14 (95% CI, 1.09-1.19; 50.1% increase among women) and DDLT: 0.87 (95% CI, 0.86-0.88; 10.3% increase among women). Candidate anthropometric and liver measurements had the strongest association with disparities between men and women in wait list mortality (125.8% increase among women) and DDLT (49.0% increase among women). Conclusions and Relevance: Our findings suggest that addressing geographic disparities alone may not mitigate sex-based disparities, which were associated with the inability of the MELD score to accurately estimate disease severity in women and to account for candidate anthropometric and liver measurements in this study.

Geographic Differences in Population Health and Expected Organ Supply in the Gulf Coast Region of the United States Compared to Non-Gulf States.

BACKGROUND: The Final Rule aimed to reduce geographic disparities in access to transplantation by prioritizing the need for transplant over donor proximity. However, disparities in waiting times persist for deceased donor kidney transplantation. The kidney allocation system implemented in 2014 does not account for potential local supply based on population health characteristics within a donation service area (DSA). We hypothesized that regions with traditionally high rates of comorbid disease, such as the states located along the Gulf of Mexico (Gulf States), may be disadvantaged by limited local supply secondary to poor population health. METHODS: Using data from the Robert Wood Johnson Foundation County Health Rankings, the United States Renal Data System, and the Scientific Registry of Transplant Recipients, we compared population-level characteristics and expected kidney donation rates by Gulf States location. RESULTS: Prevalence of African American ethnicity, end-stage renal disease, diabetes, fair/poor self-rated health, physical inactivity, food insecurity, and uninsurance were higher among Gulf State DSAs. On unadjusted analyses, Gulf State DSAs were associated with 3.52 fewer expected kidney donors per 100 eligible deaths than non-Gulf States. After adjustment, there was no longer a statistically significant difference in expected kidney donation rate. CONCLUSIONS: Although Gulf State DSAs have lower expected donation rates, these differences appear to be driven by the prevalence of health factors negatively associated with donation rate. These data suggest the need to discuss population health characteristics when examining kidney allocation policy, to account for potential lower supply of donors and to further address geographic disparities in access to kidney transplantation.

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.

Redefining the Influence of Ethnicity on Simultaneous Kidney and Pancreas Transplantation Outcomes: A 15-year Single-center Experience.

OBJECTIVE: To examine the largest single-center experience of simultaneous kidney/pancreas transplantation (SPK) transplantation among African-Americans (AAs). BACKGROUND: Current dogma suggests that AAs have worse survival following SPK than white recipients. We hypothesize that this national trend may not be ubiquitous. METHODS: From August 30, 1999, through October 1, 2014, 188 SPK transplants were performed at the University of Alabama at Birmingham (UAB) and 5523 were performed at other US centers. Using Kaplan-Meier survival estimates and Cox proportional hazards regression, we examined the influence of recipient ethnicity on survival. RESULTS: AAs comprised 36.2% of the UAB cohort compared with only 19.1% nationally (P < 0.01); yet, overall, 3-year graft survival was statistically higher among UAB than US cohort (kidney: 91.5% vs 87.9%, P = 0.11; pancreas: 87.4% vs 81.3%; P = 0.04, respectively) and persisted on adjusted analyses [kidney adjusted hazard ratio (aHR): 0.58, 95% confidence interval (95% CI) 0.35-0.97, P = 0.04; pancreas aHR: 0.54, 95% CI 0.34-0.85, P = 0.01]. Among the UAB cohort, graft survival did not differ between AA and white recipients; in contrast, the US cohort experienced significantly lower graft survival rates among AA than white recipients (kidney 5 years: 76.5% vs 82.3%, P < 0.01; pancreas 5 years: 72.2% vs 76.3%, P = 0.01; respectively). CONCLUSION: Among a single-center cohort of SPK transplants overrepresented by AAs, we demonstrated similar outcomes among AA and white recipients and better outcomes than the US experience. These data suggest that current dogma may be incorrect. Identifying best practices for SPK transplantation is imperative to mitigate racial disparities in outcomes observed at the national level.

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.