Jennie P. Perryman

The Role of Race and Poverty on Steps to Kidney Transplantation in the Southeastern United States

Racial disparities in access to renal transplantation exist, but the effects of race and socioeconomic status (SES) on early steps of renal transplantation have not been well explored. Adult patients referred for renal transplant evaluation at a single transplant center in the Southeastern United States from 2005 to 2007, followed through May 2010, were examined. Demographic and clinical data were obtained from patients medical records and then linked with United States Renal Data System and American Community Survey Census data. Cox models examined the effect of race on referral, evaluation, waitlisting and organ receipt. Of 2291 patients, 64.9% were black, the mean age was 49.4 years and 33.6% lived in poor neighborhoods. Racial disparities were observed in access to referral, transplant evaluation, waitlisting and organ receipt. SES explained almost one‐third of the lower rate of transplant among black versus white patients, but even after adjustment for demographic, clinical and SES factors, blacks had a 59% lower rate of transplant than whites (hazard ratio = 0.41; 95% confidence interval: 0.28–0.58). Results suggest that improving access to healthcare may reduce some, but not all, of the racial disparities in access to kidney transplantation.

Racial disparities in pediatric access to kidney transplantation: does socioeconomic status play a role?

Racial disparities persist in access to renal transplantation in the United States, but the degree to which patient and neighborhood socioeconomic status (SES) impacts racial disparities in deceased donor renal transplantation access has not been examined in the pediatric and adolescent end‐stage renal disease (ESRD) population. We examined the interplay of race and SES in a population‐based cohort of all incident pediatric ESRD patients <21 years from the United States Renal Data System from 2000 to 2008, followed through September 2009. Of 8 452 patients included, 30.8% were black, 27.6% white‐Hispanic, 44.3% female and 28.0% lived in poor neighborhoods. A total of 63.4% of the study population was placed on the waiting list and 32.5% received a deceased donor transplant. Racial disparities persisted in transplant even after adjustment for SES, where minorities were less likely to receive a transplant compared to whites, and this disparity was more pronounced among patients 18–20 years. Disparities in access to the waiting list were mitigated in Hispanic patients with private health insurance. Our study suggests that racial disparities in transplant access worsen as pediatric patients transition into young adulthood, and that SES does not explain all of the racial differences in access to kidney transplantation.

Impact of a Patient Education Program on Disparities in Kidney Transplant Evaluation

BACKGROUND AND OBJECTIVES In 2007, the Emory Transplant Center (ETC) kidney transplant program implemented a required educational session for ESRD patients referred for renal transplant evaluation to increase patient awareness and decrease loss to follow-up. The purpose of this study was to evaluate the association of the ETC education program on completion of the transplant evaluation process. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Incident, adult ESRD patients referred from 2005 to 2008 were included. Patient data were abstracted from medical records and linked with data from the United States Renal Data System. Evaluation completion was compared by pre- and posteducational intervention groups in binomial regression models accounting for temporal confounding. RESULTS A total of 1126 adult ESRD patients were examined in two transplant evaluation eras (75% pre- and 25% postintervention). One-year evaluation completion was higher in the post- versus preintervention group (80.4% versus 44.7%, P<0.0001). In adjusted analyses controlling for time trends, the adjusted probability of evaluation completion at 1 year was higher among the intervention versus nonintervention group (risk ratio=1.38, 95% confidence interval=1.12-1.71). The effect of the intervention was stronger among black patients and those patients living in poor neighborhoods (likelihood ratio test for interaction, P<0.05). CONCLUSIONS Standardizing transplant education may help reduce some of the racial and socioeconomic disparities observed in kidney transplantation.

Project ACTS: An Intervention to Increase Organ and Tissue Donation Intentions Among African Americans:

This study sought to evaluate the effectiveness of Project ACTS: About Choices in Transplantation and Sharing, which was developed to increase readiness for organ and tissue donation among African American adults. Nine churches (N = 425 participants) were randomly assigned to receive donation education materials currently available to consumers (control group) or Project ACTS educational materials (intervention group). The primary outcomes assessed at 1-year follow-up were readiness to express donation intentions via one’s driver’s license, donor card, and discussion with family. Results indicate a significant interaction between condition and time on readiness to talk to family such that participants in the intervention group were 1.64 times more likely to be in action or maintenance at follow-up than were participants in the control group (p = .04). There were no significant effects of condition or condition by time on readiness to be identified as a donor on one’s driver’s license and by carrying a donor card. Project ACTS may be an effective tool for stimulating family discussion of donation intentions among African Americans although additional research is needed to explore how to more effectively affect written intentions.

Understanding the Role of Clergy in African American Organ and Tissue Donation Decision-Making

Objectives. To describe and understand the attitudes, beliefs, and experiences towards organ and tissue donation among African American clergy in Atlanta, Georgia, USA. The secondary objective is to understand what messages clergy are providing to their parishioners relative to organ and tissue donation, and what their perceived role is in donation education. Design. A qualitative study in which African American clergy (n=26) participated in four focus groups. Results. African American clergy, though generally supportive of organ and tissue donation in principle, have serious reservations about donation due to perceived inequalities in the donation and transplantation system. The clergy did not personally hold religious concerns about donation, but expressed that these concerns were a major barrier to donation among their parishioners. None of the clergy knew the written position that their religion took on donation; they acknowledged the need for more education for them and their parishioners on this topic. They also felt that as religious leaders, they could play an important role in promoting organ and tissue donation among African American parishioners. Conclusions. African American clergy and religious leaders may play an important role towards improving willingness to donate among African American parishioners, but more education and advocacy is needed to prepare them for this role.

Understanding the relationship between trust in health care and attitudes toward living donor transplant among African Americans with end‐stage renal disease

Transplantation is the favored therapy for patients with end‐stage renal disease (ESRD). Unfortunately, demand for available organs far outpaces the supply. African Americans are disproportionately affected by the ever‐widening gap between organ supply and demand. Additionally, structural, biological, and social factors contribute to feelings of unease some African Americans may feel regarding living donor transplant (LDT). The present research examines the relationship between trust in health care and attitudes toward LDT among African American ESRD patients. We hypothesized that lower trust in health care would be significantly associated with negative attitudes toward LDT, and that this relationship would be moderated by patient attitudes toward dialysis. Data were collected from August 2011 to April 2012 as part of a larger study. Measures included trust (of doctors, racial equity of treatment, and hospitals) and attitudes toward both LDT and dialysis. Bivariate analysis revealed that trust in ones doctor, hospital, and in racial equity in health care was significantly correlated with attitudes toward LDT (r = 0.265; r = 0.131; and r = 0.202, respectively). Additionally, attitudes toward dialysis moderated the relationships between Trust in Doctors/Attitudes toward LDT and Trust in Racial equity of treatment/Attitudes toward LDT. Findings suggest a strong relationship between trust in health care and attitudes toward LDT. These findings also shed light on how dialysis experiences are related to the relationship between trust in health care and attitudes toward LDT.

Transplant Center Patient Navigator and Access to Transplantation among High-Risk Population A Randomized, Controlled Trial

BACKGROUND AND OBJECTIVES Barriers exist in access to kidney transplantation, where minority and patients with low socioeconomic status are less likely to complete transplant evaluation. The purpose of this study was to examine the effectiveness of a transplant center-based patient navigator in helping patients at high risk of dropping out of the transplant evaluation process access the kidney transplant waiting list. DESIGN, SETTING, PARTICIPANTS & MEASUREMENTS We conducted a randomized, controlled trial of 401 patients (n=196 intervention and n=205 control) referred for kidney transplant evaluation (January 2013 to August 2014; followed through May 2016) at a single center. A trained navigator assisted intervention participants from referral to waitlisting decision to increase waitlisting (primary outcome) and decrease time from referral to waitlisting (secondary outcome). Time-dependent Cox proportional hazards models were used to determine differences in waitlisting between intervention and control patients. RESULTS At study end, waitlisting was not significantly different among intervention (32%) versus control (26%) patients overall (P=0.17), and time from referral to waitlisting was 126 days longer for intervention patients. However, the effectiveness of the navigator varied from early (<500 days from referral) to late (≥500 days) follow-up. Although no difference in waitlisting was observed among intervention (50%) versus control (50%) patients in the early period (hazard ratio, 1.03; 95% confidence interval, 0.69 to 1.53), intervention patients were 3.3 times more likely to be waitlisted after 500 days (75% versus 25%; hazard ratio, 3.31; 95% confidence interval, 1.20 to 9.12). There were no significant differences in intervention versus control patients who started evaluation (85% versus 79%; P=0.11) or completed evaluation (58% versus 51%; P=0.14); however, intervention patients had more living donor inquiries (18% versus 10%; P=0.03). CONCLUSIONS A transplant center-based navigator targeting disadvantaged patients improved waitlisting but not until after 500 days of follow-up. However, the absolute effect was relatively small.

Understanding African American’s Religious Beliefs and Organ Donation Intentions

African Americans are overrepresented on the organ transplant waiting list and underrepresented among organ and tissue donors. One of the most highly noted reasons for lack of donation is the perception that donation is contrary to religious beliefs. The purpose of this cross-sectional study is to explore the complexities of religion (beliefs, religiosity, and religious involvement) and its association with willingness to donate and the written expression of donation intentions. Findings from a sample of 505 African American participants suggest that religion is a multidimensional construct and results differ depending on how the construct is measured and operationalized.

Testing the utility of a modified organ donation model among African American adults

African Americans are overrepresented on the organ transplant waiting list because they are disproportionately impacted by certain health conditions that potentially warrant a life-saving transplant. While the African American need for transplantation is considerably high, organ and tissue donation rates are comparatively low, resulting in African Americans spending more than twice the amount of time on the national transplant waiting list as compared to people of other racial/ethnic backgrounds. There are a multitude of factors that contribute to the reluctance expressed by African Americans with respect to organ donation. This study proposes the use of an adaptation of the Organ Donation Model to explore the ways in which knowledge, trust in the donation/allocation process, and religious beliefs impact African American donation decision making. Bivariate and path analyses demonstrated that alignment with religious beliefs was the greatest driving factor with respect to attitudes towards donation; attitudes were significantly associated with donation intentions; and knowledge is directly associated with intentions to serve as a potential deceased organ donor. The significance of these variables speaks to the importance of their inclusion in a model that focuses on the African American population and offers new direction for more effective donation education efforts.

Exploring Donotion-related Knowledge Attitudes, Beliefs and Distrust Among African Americans

UNLABELLED Within the field of organ donation, multiple studies have shown differences in patterns of trust, however, it is unclear which elements are significantly related to donation decision making among African Americans. This study sought to disentangle the construct of trust by parceling out measures related to the healthcare system, the donation/allocation system, and the physician; and determine the relationship of these dimensions to attitudes toward organ and tissue donation. Cross-sectional survey data were gathered from 585 African American adults residing in the Atlanta metropolitan area. Results indicate that varying dimensions of trust function differently in their influence on attitudes toward donation. Our findings suggest that trust is critical to donation decision-making and should be measured with a multidimensional approach, particularly among racial/ethnic groups with complex histories with the healthcare system. This study underlines the need for a more tailored, individualized approach to promoting organ and tissue donation among African Americans. ACKNOWLEDGEMENTS We also thank Rianot Amzat, Mohua Basu and Rhonda DeLaremore for their assistance with data collection, cleaning, entry, and analysis.