Medical Distrust Among Kidney Transplant Candidates.

BACKGROUND: Medical distrust may hinder kidney transplantation (KT) access. Among KT candidates evaluated for waitlisting, we identified factors associated with high distrust levels and quantified their association with waitlisting. METHODS: Among 812 candidates (2018-2023), we assessed distrust using the Revised Health Care System Distrust Scale across composite, competence, and values subscales. We used linear regression to quantify the associations between candidate and neighborhood-level factors and distrust scores. We used Cox models to quantify the associations between distrust scores and waitlisting. RESULTS: At KT evaluation, candidates who were aged 35-49 years (difference = 1.97, 95% CI: 0.78-3.16), female (difference = 1.10, 95% CI: 0.23-1.97), and Black (difference = 1.47, 95% CI: 0.47-2.47) were more likely to report higher composite distrust score. For subscales, candidates aged 35-49 were more likely to have higher competence distrust score (difference = 1.14, 95% CI: 0.59-1.68) and values distrust score (difference = 0.83, 95% CI: 0.05-1.61). Race/ethnicity (Black, difference = 1.42, 95% CI: 0.76-2.07; Hispanic, difference = 1.52, 95% CI: 0.35-2.69) was only associated with higher values distrust scores. Female candidates reporting higher rescaled values distrust scores (each one point) had a lower chance of waitlisting (aHR = 0.78, 95% CI: 0.63-0.98), whereas this association was not observed among males. Similarly, among non-White candidates, each 1-point increase in both rescaled composite (aHR = 0.87, 95% CI: 0.77-0.99) and values (aHR = 0.82, 95% CI: 0.68-0.99) distrust scores was associated with a lower chance of waitlisting, while there was no association among White candidates. CONCLUSION: Female, younger, and non-White candidates reported higher distrust scores. Values distrust may contribute to the long-standing racial/ethnic and gender disparities in access to KT. Implementing tailored strategies to reduce distrust in transplant care may improve KT access for groups that experience persistent disparities.

Critical interactions between race and the highly granular area deprivation index in liver transplant evaluation.

Neighborhood socioeconomic deprivation may have important implications on disparities in liver transplant (LT) evaluation. In this retrospective cohort study, we constructed a novel dataset by linking individual patient-level data with the highly granular Area Deprivation Index (ADI), which is advantageous over other neighborhood measures due to: specificity of Census Block-Group (versus Census Tract, Zip code), scoring, and robust variables. Our cohort included 1377 adults referred to our center for LT evaluation 8/1/2016-12/31/2019. Using modified Poisson regression, we tested for effect measure modification of the association between neighborhood socioeconomic status (nSES) and LT evaluation outcomes (listing, initiating evaluation, and death) by race and ethnicity. Compared to patients with high nSES, those with low nSES were at higher risk of not being listed (aRR = 1.14; 95%CI 1.05-1.22; p < .001), of not initiating evaluation post-referral (aRR = 1.20; 95%CI 1.01-1.42; p = .03) and of dying without initiating evaluation (aRR = 1.55; 95%CI 1.09-2.2; p = .01). While White patients with low nSES had similar rates of listing compared to White patients with high nSES (aRR = 1.06; 95%CI .96-1.17; p = .25), Underrepresented patients from neighborhoods with low nSES incurred 31% higher risk of not being listed compared to Underrepresented patients from neighborhoods with high nSES (aRR = 1.31; 95%CI 1.12-1.5; p < .001). Interventions addressing neighborhood deprivation may not only benefit patients with low nSES but may address racial and ethnic inequities.

Designing Interventions Addressing Structural Racism to Reduce Kidney Health Disparities: A Report from a National Institute of Diabetes and Digestive and Kidney Diseases Workshop.

Structural racism embodies the many ways in which society fosters racial discrimination through "mutually reinforcing inequitable systems" that limit access to resources and opportunities that can promote health and well being among marginalized communities. To achieve health equity, and kidney health equity more specifically, structural racism must be eliminated. In February 2022, the National Institute of Diabetes and Digestive and Kidney Diseases convened the "Designing Interventions that Address Structural Racism to Reduce Kidney Health Disparities" workshop, which was aimed at describing the mechanisms through which structural racism contributes to health and health care disparities for people along the continuum of kidney disease and identifying actionable opportunities for interventional research focused on dismantling or addressing the effects of structural racism. Participants identified six domains as key targets for interventions and future research: (1) apply an antiracism lens, (2) promote structural interventions, (3) target multiple levels, (4) promote effective community and stakeholder engagement, (5) improve data collection, and (6) advance health equity through new health care models. There is an urgent need for research to develop, implement, and evaluate interventions that address the unjust systems, policies, and laws that generate and perpetuate inequities in kidney health.

Examining post-donation outcomes in Hispanic/Latinx living kidney donors in the United States: A systematic review.

We conducted a systematic review to assess outcomes in Hispanic donors and explore how Hispanic ethnicity was characterized. We searched PubMed, EMBASE, and Scopus through October 2021. Two reviewers independently screened study titles, abstracts, and full texts; they also qualitatively synthesized results and independently assessed quality of included studies. Eighteen studies met our inclusion criteria. Study sample sizes ranged from 4007 to 143,750 donors and mean age ranged from 37 to 54 years. Maximum follow-up time of studies varied from a perioperative donor nephrectomy period to 30 years post-donation. Hispanic donors ranged between 6% and 21% of the donor populations across studies. Most studies reported Hispanic ethnicity under race or a combined race and ethnicity category. Compared to non-Hispanic White donors, Hispanic donors were not at increased risk for post-donation mortality, end-stage kidney disease, cardiovascular disease, non-pregnancy-related hospitalizations, or overall perioperative surgical complications. Compared to non-Hispanic White donors, most studies showed Hispanic donors were at higher risk for diabetes mellitus following nephrectomy; however, mixed findings were seen regarding the risk for post-donation chronic kidney disease and hypertension. Future studies should evaluate cultural, socioeconomic, and geographic differences within the heterogeneous Hispanic donor population, which may further explain variation in health outcomes.

Multicenter study of racial and ethnic inequities in liver transplantation evaluation: Understanding mechanisms and identifying solutions.

Racial and ethnic disparities persist in access to the liver transplantation (LT) waiting list; however, there is limited knowledge about underlying system-level factors that may be responsible for these disparities. Given the complex nature of LT candidate evaluation, a human factors and systems engineering approach may provide insights. We recruited participants from the LT teams (coordinators, advanced practice providers, physicians, social workers, dieticians, pharmacists, leadership) at two major LT centers. From December 2020 to July 2021, we performed ethnographic observations (participant-patient appointments, committee meetings) and semistructured interviews (N = 54 interviews, 49 observation hours). Based on findings from this multicenter, multimethod qualitative study combined with the Systems Engineering Initiative for Patient Safety 2.0 (a human factors and systems engineering model for health care), we created a conceptual framework describing how transplant work system characteristics and other external factors may improve equity in the LT evaluation process. Participant perceptions about listing disparities described external factors (e.g., structural racism, ambiguous national guidelines, national quality metrics) that permeate the LT evaluation process. Mechanisms identified included minimal transplant team diversity, implicit bias, and interpersonal racism. A lack of resources was a common theme, such as social workers, transportation assistance, non-English-language materials, and time (e.g., more time for education for patients with health literacy concerns). Because of the minimal data collection or center feedback about disparities, participants felt uncomfortable with and unadaptable to unwanted outcomes, which perpetuate disparities. We proposed transplant center-level solutions (i.e., including but not limited to training of staff on health equity) to modifiable barriers in the clinical work system that could help patient navigation, reduce disparities, and improve access to care. Our findings call for an urgent need for transplant centers, national societies, and policy makers to focus efforts on improving equity (tailored, patient-centered resources) using the science of human factors and systems engineering.

Dismantling structural racism as a root cause of racial disparities in COVID-19 and transplantation.

As the United States faces unparalleled challenges due to COVID-19, racial disparities in health and healthcare have once again taken center stage. If effective interventions to address racial disparities in transplantation, including those magnified by COVID-19, are to be designed and implemented at the national level, it is first critical to understand the complex mechanisms by which structural, institutional, interpersonal, and internalized racism influence the presence of racial disparities in healthcare and transplantation. Specifically, we must deeply re-evaluate how scientists and clinicians think about race in the transplant context, and we must actively shift our efforts from merely observing disparities to acknowledging and acting on racism as a root cause underlying the vast majority of these disparities. We must do better to ensure equitable access and outcomes for all transplant patients, including within the current COVID-19 pandemic. We respectfully offer this viewpoint as a call to action to every reader to join us in working together to help dismantle racist influences and advance transplant equity.

Results of a data-driven performance improvement initiative in organ donation.

New metrics for organ procurement organization (OPO) performance utilize National Center for Health Statistics data to measure cause, age, and location consistent (CALC) deaths. We used this denominator to identify opportunities for improved donor conversion at one OPO, Indiana Donor Network (INOP). We sought to determine whether such analyses are immediately actionable for quality improvement (QI) initiatives directed at increased donor conversion. CALC-based assessment of INOP's performance revealed an opportunity to improve conversion of older donors. Following the QI initiative, INOP donor yield rose by 44%, while organs transplanted rose by 29%. These changes tolerated temporary disruption around the COVID-19 pandemic. Improved donor yield was primarily seen in older groups identified by CALC-based methods. Process changes in resource allocation and monitoring were associated with a 57% increase in the number of potential donors approached in the QI period and a subsequent rise in the number of potential donor referrals, suggesting positive feedback at area hospitals. Post-intervention, INOP's projected donation performance rose from 51st to 18th among all OPOs. OPOs can use CALC death data to accurately assess donor conversion by categories including age and race/ethnicity. These data can be used in real time to inform OPO-level processes to maximize donor recovery.

COVID-19, Racism, and Racial Disparities in Kidney Disease: Galvanizing the Kidney Community Response.

PodcastThis article contains a podcast athttps://www.asn-online.org/media/podcast/JASN/2020_07_21_JASN2020060809.mp3.

Elucidating measures of systemic racism to mitigate racial disparities in kidney transplantation.

PURPOSE OF REVIEW: Given recent national attention to the role of racism in perpetuating racial inequities in society and health, this review provides a timely and relevant summary of key measures of systemic racism in kidney transplantation. More specifically, the review identifies current and promising interventions, whereas highlighting the need for more sustainable and impactful interventions. RECENT FINDINGS: Racial disparities persist in kidney transplantation. Black and Hispanic individuals are less likely to receive a kidney transplant than non-Hispanic Whites despite disproportionately higher rates of kidney failure. Studies demonstrate that socioeconomic factors do not fully explain existing racial disparities in transplantation. Systemic racism at all levels, individual, interpersonal, institutional, and structural, is at the core of racial disparities, and current interventions are insufficient in mitigating their effects. Thus, targeted and sustainable interventions must be implemented to mitigate systemic racism in kidney transplantation. SUMMARY: Systemic racism in all its forms continues to influence disparities at all stages of kidney transplantation. This paper highlights recent findings that shed light on how racism contributes to racial disparities in kidney transplantation. Using these findings to identify targets and strategies for mitigation, relevant interventions and policies that show promise are detailed.

Gender and racial disparities in the transplant surgery workforce.

PURPOSE OF REVIEW: This review explores trends in the United States (US) transplant surgery workforce with a focus on historical demographics, post-fellowship job market, and quality of life reported by transplant surgeons. Ongoing efforts to improve women and racial/ethnic minority representation in transplant surgery are highlighted. Future directions to create a transplant workforce that reflects the diversity of the US population are discussed. RECENT FINDINGS: Representation of women and racial and ethnic minorities among transplant surgeons is minimal. Although recent data shows an improvement in the number of Black transplant surgeons from 2% to 5.5% and an increase in women to 12%, the White to Non-White transplant workforce ratio has increased 35% from 2000 to 2013. Transplant surgeons report an average of 4.3 call nights per week and less than five leisure days a month. Transplant ranks 1st among surgical sub-specialties in the prevalence of three well-studied facets of burnout. Concerns about lifestyle may contribute to the decreasing demand for advanced training in abdominal transplantation by US graduates. SUMMARY: Minimal improvements have been made in transplant surgery workforce diversity. Sustained and intentional recruitment and promotion efforts are needed to improve the representation of women and minority physicians and advanced practice providers in the field.

The RICH LIFE Project: A cluster randomized pragmatic trial comparing the effectiveness of health system only vs. health system Plus a collaborative/stepped care intervention to reduce hypertension disparities.

Disparities in the control of hypertension and other cardiovascular disease risk factors are well-documented in the United States, even among patients seen regularly in the healthcare system. Few existing approaches explicitly address disparities in hypertension care and control. This paper describes the RICH LIFE Project (Reducing Inequities in Care of Hypertension: Lifestyle Improvement for Everyone) design. METHODS: RICH LIFE is a two-arm, cluster-randomized trial, comparing the effectiveness of enhanced standard of care, "Standard of Care Plus" (SCP), to a multi-level intervention, "Collaborative Care/Stepped Care" (CC/SC), for improving blood pressure (BP) control and patient activation and reducing disparities in BP control among 1890 adults with uncontrolled hypertension and at least one other cardiovascular disease risk factor treated at 30 primary care practices in Maryland and Pennsylvania. Fifteen practices randomized to the SCP arm receive standardized BP measurement training; race/ethnicity-specific audit and feedback of BP control rates; and quarterly webinars in management practices, quality improvement and disparities reduction. Fifteen practices in the CC/SC arm receive the SCP interventions plus implementation of the collaborative care model with stepped-care components (community health worker referrals and virtual specialist-panel consults). The primary clinical outcome is BP control (<140/90 mm Hg) at 12 months. The primary patient-reported outcome is change from baseline in self-reported patient activation at 12 months. DISCUSSION: This study will provide knowledge about the feasibility of leveraging existing resources in routine primary care and potential benefits of adding supportive community-facing roles to improve hypertension care and reduce disparities. TRIAL REGISTRATION: Clinicaltrials.govNCT02674464.

Donor-Recipient Relationship and Risk of ESKD in Live Kidney Donors of Varied Racial Groups.

RATIONALE & OBJECTIVE: Risk factors for kidney failure are the basis of live kidney donor candidate evaluation. We quantified risk for end-stage kidney disease (ESKD) by the biological relationship of the donor to the recipient, a risk factor that is not addressed by current clinical practice guidelines. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: A cohort of 143,750 US kidney donors between 1987 and 2017. EXPOSURE: Biological relationship of donor and recipient. OUTCOME: ESKD. Donors' records were linked to national dialysis and transplantation registries to ascertain development of the outcome. ANALYTIC APPROACH: Donors were observed over a median of 12 (interquartile range, 6-18; maximum, 30) years. Survival analysis methods that account for the competing risk for death were used. RESULTS: Risk for ESKD varied by orders of magnitude across donor-recipient relationship categories. For Asian donors, risks compared with unrelated donors were 259.4-fold greater for identical twins (95% CI, 19.5-3445.6), 4.7-fold greater for full siblings (95% CI, 0.5-41.0), 3.5-fold greater for offspring (95% CI, 0.6-39.5), 1.0 for parents, and 1.0 for half-sibling or other biological relatives. For black donors, risks were 22.5-fold greater for identical twin donors (95% CI, 4.7-107.0), 4.1-fold for full siblings (95% CI, 2.1-7.8), 2.7-fold for offspring (95% CI, 1.4-5.4), 3.1-fold for parents (95% CI, 1.4-6.8), and 1.3-fold for half-sibling or other biological relatives (95% CI, 0.5-3.3). For white donors, risks were 3.5-fold greater for identical twin donors (95% CI, 0.5-25.3), 2.0-fold for full siblings (95% CI, 1.4-2.8), 1.4-fold for offspring (95% CI, 0.9-2.3), 2.9-fold for parents (95% CI, 2.0-4.1), and 0.8-fold for half-sibling or other biological relatives (95% CI, 0.3-1.6). LIMITATIONS: Insufficient sample size in some race and relationship groups. Absence of data for family history of kidney disease for donors biologically unrelated to their recipients. CONCLUSIONS: Marked differences in risk for ESKD across types of donor-recipient relationship were observed for Asian, black, and white donors. These findings warrant further validation with more robust data to better inform clinical practice guidelines.

Better graft outcomes from offspring donor kidneys among living donor kidney transplant recipients in the United States.

A recent study reported that kidney transplant recipients of offspring living donors had higher graft loss and mortality. This seemed counterintuitive, given the excellent HLA matching and younger age of offspring donors; we were concerned about residual confounding and other study design issues. We used Scientific Registry of Transplant Recipients data 2001-2016 to evaluate death-censored graft failure (DCGF) and mortality for recipients of offspring versus nonoffspring living donor kidneys, using Cox regression models with interaction terms. Recipients of offspring kidneys had lower DCGF than recipients of nonoffspring kidneys (15-year cumulative incidence 21.2% vs 26.1%, P < .001). This association remained after adjustment for recipient and transplant factors (adjusted hazard ratio [aHR] = 0.73 0.770.82 , P < .001), and was attenuated among African American donors (aHR 0.77 0.850.95 ; interaction: P = .01) and female recipients (aHR 0.77 0.840.91 , P < .001). Although offspring kidney recipients had higher mortality (15-year mortality 56.4% vs 37.2%, P < .001), this largely disappeared with adjustment for recipient age alone (aHR = 1.02 1.061.10 , P = .002) and was nonsignificant after further adjustment for other recipient characteristics (aHR = 0.93 0.971.01 , P = .1). Kidneys from offspring donors provided lower graft failure and comparable mortality. An otherwise eligible donor should not be dismissed because they are the offspring of the recipient, and we encourage continued individualized counseling for potential donors.

Limited health literacy and adverse outcomes among kidney transplant candidates.

More than one-third of US adults have limited health literacy, putting them at risk of adverse clinical outcomes. We evaluated the prevalence of limited health literacy among 1578 adult kidney transplant (KT) candidates (May 2014-November 2017) and examined its association with listing for transplant and waitlist mortality in this pilot study. Limited health literacy was assessed at KT evaluation by using a standard cutoff score ≤5 on the Brief Health Literacy Screen (score range 0-12, lower scores indicate worse health literacy). We used logistic regression and adjusted Cox proportional hazards models to identify risk factors for limited health literacy and to quantify its association with listing and waitlist mortality. We found that 8.9% of candidates had limited health literacy; risk factors included less than college education (adjusted odds ratio [aOR] = 2.87, 95% confidence interval [CI]:1.86-4.43), frailty (aOR = 1.85, 95% CI:1.22-2.80), comorbidity (Charlson comorbidity index [1-point increase] aOR = 1.12, 95% CI: 1.04-1.20), and cognitive impairment (aOR = 3.45, 95% CI: 2.20-5.41) after adjusting for age, sex, race, and income. Candidates with limited health literacy had a 30% (adjusted hazard ratio = 0.70, 95% CI: 0.54-0.91) decreased likelihood of listing and a 2.42-fold (95% CI: 1.16- to 5.05-fold) increased risk of waitlist mortality. Limited health literacy may be a salient mechanism in access to KT; programs to aid candidates with limited health literacy may improve outcomes and reduce disparities.

Perspectives on implementing mobile health technology for living kidney donor follow-up: In-depth interviews with transplant providers.

BACKGROUND: United States transplant centers are required to report follow-up data for living kidney donors for 2 years post-donation. However, living kidney donor (LKD) follow-up is often incomplete. Mobile health (mHealth) technologies could ease data collection burden but have not yet been explored in this context. METHODS: We conducted semi-structured in-depth interviews with a convenience sample of 21 transplant providers and thought leaders about challenges in LKD follow-up, and the potential role of mHealth in overcoming these challenges. RESULTS: Participants reported challenges conveying the importance of follow-up to LKDs, limited data from international/out-of-town LKDs, and inadequate staffing. They believed the 2-year requirement was insufficient, but expressed difficulty engaging LKDs for even this short time and inadequate resources for longer-term follow-up. Participants believed an mHealth system for post-donation follow-up could benefit LKDs (by simplifying communication/tasks and improving donor engagement) and transplant centers (by streamlining communication and decreasing workforce burden). Concerns included cost, learning curves, security/privacy, patient language/socioeconomic barriers, and older donor comfort with mHealth technology. CONCLUSIONS: Transplant providers felt that mHealth technology could improve LKD follow-up and help centers meet reporting thresholds. However, designing a secure, easy to use, and cost-effective system remains challenging.

Use of Twitter in communicating living solid organ donation information to the public: An exploratory study of living donors and transplant professionals.

BACKGROUND: As transplant centers start leveraging Twitter for information dissemination and public engagement, it is important to understand current living solid organ donation-related Twitter use. METHODS: We identified public Twitter profiles available in 01/2017 that referenced living organ donation and analyzed the use of donation-related Twitter handles, names, or profile information. Tweets were manually abstracted and qualitatively analyzed for common themes. Social media influence of those tweeting about living donation was evaluated using Klout score. RESULTS: We identified 93 donors, 61 professionals, 12 hospitals, and 19 organizations that met eligibility criteria. Social media influence was similar across these groups (P = 0.4). Donors (16%) and organizations (23%) were more likely than professionals (7%) or hospitals (0%) to include transplant-related educational information in their profiles (P = 0.007). Living donation-related tweets were most commonly donation stories (33%), news reports (20%), reports about new transplant research (15%), and sharing transplant candidates' searches for donors (14%). CONCLUSIONS: This exploratory study of living donors and transplant professionals, hospitals, and organizations on Twitter provides insight into how the social media platform may be used to communicate about and disseminate information about living donation.

Barriers to access in pediatric living-donor liver transplantation.

Children receiving a LDLT have superior post-transplant outcomes, but this procedure is only used for 10% of transplant recipients. Better understanding about barriers toward LDLT and the sociodemographic characteristics that influence these underlying mechanisms would help to inform strategies to increase its use. We conducted an online, anonymous survey of parents/caregivers for children awaiting, or have received, a liver transplant regarding their knowledge and attitudes about LDLT. The survey was completed by 217 respondents. While 97% of respondents understood an individual could donate a portion of their liver, only 72% knew the steps in evaluation, and 69% understood the donor surgery was covered by the recipient's insurance. Individuals with public insurance were less likely than those with private insurance to know the steps for LDLT evaluation (44% vs 82%; P < 0.001). Respondents with public insurance were less likely to know someone that had been a living donor (44% vs 56%; P = 0.005) as were individuals without a college degree (64% vs 85%; P = 0.007). Nearly all respondents generally trusted their healthcare team. Among respondents, 82% believed they were well-informed about LDLT but individuals with public insurance were significantly less likely to feel well-informed (67% vs 87%; P = 0.03) and to understand how donor surgery might impact donor work/time off (44% vs 81%; P = 0.001). Substantial gaps exist in parental understanding about LDLT, including its evaluation, potential benefits, and complications. Greater emphasis on addressing these barriers, especially to individuals with fewer resources, will be helpful to expand the use of LDLT.

Factors associated with perceived donation-related financial burden among living kidney donors.

The perception of living kidney donation-related financial burden affects willingness to donate and the experience of donation, yet no existing tools identify donors who are at higher risk of perceived financial burden. We sought to identify characteristics that predicted higher risk of perceived financial burden. We surveyed 51 living kidney donors (LKDs) who donated from 01/2015 to 3/2016 about socioeconomic characteristics, predonation cost concerns, and perceived financial burden. We tested associations between both self-reported and ZIP code-level characteristics and perceived burden using Fisher's exact test and bivariate modified Poisson regression. Donors who perceived donation-related financial burden were less likely to have an income above their ZIP code median (14% vs. 72%, P = .006); however, they were more likely than donors who did not perceive burden to rent their home (57% vs. 16%, P = .03), have an income <$60 000 (86% vs. 20%, P = .002), or have had predonation cost concerns (43% vs. 7%, P = .03). Perceived financial burden was 3.6-fold as likely among those with predonation cost concerns and 10.6-fold as likely for those with incomes <$60 000. Collecting socioeconomic characteristics and asking about donation-related cost concerns prior to donation might allow transplant centers to target financial support interventions toward potential donors at higher risk of perceiving donation-related financial burden.