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Inequities in Donation and Transplant

Bongiovanni, T., Rawlings, J. E., Trompeta, J. A., & Nunez‐Smith, M. (2020). Cultural influences on willingness to donate organs among urban native Americans. Clinical Transplantation, 34(3). https://doi.org/10.1111/ctr.13804

This article highlights the need for organ donation among Native Americans due to the disproportionate burden of end stage renal disease (ESRD). The article explores the factors affecting donation among this population. Seventy percent of 183 respondents stated that they would be willing to have their organs donated after death; however, only 41% were already registered as an organ donor on their driver's license. Logistic regression analysis found specific items in domains of trust of the medical community and spirituality most closely associated with WTD. Sixty-two percent of Native Americans surveyed reported they would not donate organs because they distrust the medical community.

Arriola, K. J. (2017). Race, Racism, and Access to Renal Transplantation among African Americans. Journal of Health Care for the Poor and Underserved, 28(1), 30–45. https://doi.org/10.1353/hpu.2017.0005

This paper examines the role of internalized, personally-mediated, and institutionalized racism in creating and perpetuating disparities in access to renal transplant among African Americans. The author demonstrates how internalized racism is manifested in intrapersonal processes, personally-mediated racism is manifested in interpersonal processes, and institutionalized racism is manifested at the institutional, community, and public policy levels.

Kernodle, A. B., Zhang, W., Motter, J. D., Doby, B., Liyanage, L., Garonzik-Wang, J., Jackson, K. R., Boyarsky, B. J., Massie, A. B., Purnell, T. S., & Segev, D. L. (2021). Examination of Racial and Ethnic Differences in Deceased Organ Donation Ratio Over Time in the US. JAMA Surgery, 156(4). https://doi.org/10.1001/jamasurg.2020.7083

This study examines changes in deceased organ donation over time among. A total of 141,534 deceased donors and 5,268,200 potential donors were included in the analysis. Among Black individuals, the donation ratio increased 2.58-fold from 1999 to 2017 (yearly change in adjusted incidence rate ratio. This increase was significantly greater than the 1.60-fold increase seen in White individuals. Nevertheless, substantial racial differences remained, with Black individuals still donating at only 69% of the rate of White individuals in 2017 (P < .001). Among other racial minority populations, changes were less drastic. Deceased organ donation increased 1.80-fold among American Indian/Alaska Native and 1.40-fold among Asian or Pacific Islander populations, with substantial racial differences remaining in 2017 (American Indian/Alaska Native population donation at 28% and Asian/Pacific Islander population donation at 85% the rate of the White population). Deceased organ donation differences between Hispanic/Latino and non-Hispanic/Latino populations increased over time (4% lower in 2017).

Axelrod, D. A., Dzebisashvili, N., Schnitzler, M. A., Salvalaggio, P. R., Segev, D. L., Gentry, S. E., Tuttle-Newhall, J., & Lentine, K. L. (2010). The Interplay of Socioeconomic Status, Distance to Center, and Interdonor Service Area Travel on Kidney Transplant Access and Outcomes. Clinical Journal of the American Society of Nephrology, 5(12), 2276–2288. https://doi.org/10.2215/cjn.04940610

This study examined the national transplant list and the U.S. Census data for kidney transplant candidates to explore the variation in kidney transplant access across the U.S. due to relocation of patients with the ability to travel to better-supplied areas. The study found that patients in the highest SES quartile had increased access to transplant compared with those with lowest SES, driven strongly by 76% higher likelihood of living donor transplantation. Waitlist death was reduced in high compared with low SES candidates. High SES patients also experienced lower mortality after living and deceased donor transplant. Patients living farther from the transplant center had reduced access to deceased donor transplant and increased risk of post-transplant death. Inter-donation service area (DSA) travel was associated with a dramatic increase in deceased donor transplant access and was predicted by high SES, white race, and longer deceased-donor allograft waiting time in initial DSA. It was concluded that ongoing disparities exist in kidney transplantation access and outcomes on the basis of geography and SES despite near-universal insurance coverage under Medicare. Inter-DSA travel improves access and is more common among high SES candidates.

Siminoff, L. A., Burant, C. J., & Ibrahim, S. A. (2006). Racial Disparities in Preferences and Perceptions Regarding Organ Donation. Journal of General Internal Medicine, 21(9), 995–1000. https://doi.org/10.1111/j.1525-1497.2006.00516.x

This article seeks to elucidate the reasons for lower organ donation rates by African Americans. The authors sought to examine knowledge and attitudes about brain death, donation, and transplantation and trust in the health care system. Based on a telephone survey of individuals in Ohio, the authors found that compared with whites, African-Americans had lower rates of signing a donor card, and willingness to donate their own organs or a loved one's organs. African Americans had lower scores on the Trust in the Health Care System scale and were more likely to agree that “if doctors know I am an organ donor, they won't try to save my life”, the rich or famous are more likely to get a transplant, and less likely to agree that doctors can be trusted to pronounce death.

Li, M. T., Hillyer, G. C., Husain, S. A., & Mohan, S. (2019). Cultural barriers to organ donation among Chinese and Korean individuals in the United States: a systematic review. Transplant International, 32(10), 1001–1018. https://doi.org/10.1111/tri.13439

Asian Americans have the lowest organ donation registration rates in the United States. Aiming to understand the reasons for low organ donation registration rate among Asian Americans, more specifically Chinese and Korean Americans, the authors conducted a systematic search of databases, websites, and gray literature. Commonly reported barriers to organ donation registration among Chinese and Koreans in the literature included lack of knowledge about organ donation, distrust of health-care and allocation system, cultural avoidance of discussion of death-related topics, and desire for intact body mainly stemming from the Confucian concept of filial piety. Strong family values coupled with a cultural reluctance to discuss death-related topics among family members appear to underscore the reluctance to organ donation among Chinese and Koreans. Notably, improved knowledge negatively impacted organ donation intent and religion seemed to play a more important role when making decision about organ donation among Koreans, and the distrust of the allocation system is more prominent among Chinese. This information should be used to inform the development of culturally competent organ donation educational materials.

Higgins, R. S., & Fishman, J. A. (2006). Disparities in Solid Organ Transplantation for Ethnic Minorities: Facts and Solutions. American Journal of Transplantation, 6(11), 2556–2562. https://doi.org/10.1111/j.1600-6143.2006.01514.x

The Diversity and Minority Affairs Committee of the American Society of Transplantation (AST) convened a symposium to examine organ transplantation in underserved and minority populations. The goals of the meeting included ‘benchmarking’ of solid organ transplantation among minority populations, review of the epidemiology of end-organ damage, exploration of barriers to transplantation services and development of approaches to eliminate disparities. Participants noted that minority populations were more likely to be adversely affected by limited preventive medical care, lack of counseling regarding transplant options, and delays in transplant referrals for organ transplantation. These features largely reflect economic disadvantage as well as the reduced presence of minority professionals with training in transplant-related specialties.

Deep Demographics: Understanding Local Variation in Donor Registration. Progress in Transplantation, 26(2), 191–198. https://doi.org/10.1177/1526924816640670

This is the first published study to examine in detail the demographic factors associated with willingness to register as an organ donor at a state motor vehicles bureau. It uses registration counts controlling for the size of the general population as the measure of willingness. Local variation in registration levels is modeled as a function of a set of local socioeconomic, racial/ethnic, and immigration characteristics; cluster analysis of social areas is used to probe the effects of nonlinear combinations of local social environment factors. Results show that residence in high minority areas, lower-income areas, and immigrant-heavy areas depresses registration levels but also that significant nonlinear combinations of factors are at work. Specifically, minority/immigrant areas tend strongly to have lower registration counts controlling for population regardless of socioeconomic status (SES), whereas registration in less prosperous areas depends largely on the racial, ethnic, and immigrant proportions in those areas. Moreover, the very highest SES neighborhoods in the study area (northern California minus greater Sacramento) have very high levels of donor registration despite high racial, ethnic, and national origin diversity. 

LeClaire, J. M., Smith, N. J., Chandratre, S., Rein, L., Kamalia, M. A., Kohmoto, T., Joyce, L. D., & Joyce, D. L. (2021). Solid organ donor–recipient race‐matching: analysis of the United Network for Organ Sharing database. Transplant International, 34(4), 640–647. https://doi.org/10.1111/tri.13832

Donor ethnicity is a prognosticator in organ transplant. However, the impact of donor/recipient race matching is unclear. We hypothesized that there would be increased survival in donor–recipient race-matched organ recipients because of genetic and physiologic similarities. The UNOS database from 1999 to 2018 was queried for all solid organ transplantations including heart, lung, liver, kidney, and pancreas transplants. Data were sorted by donor and recipient race and ethnicity into matched and unmatched categories for Caucasian, African American, and Hispanic transplant recipients. After controlling for potential confounders via inverse propensity of treatment weighting, post-transplant patient and graft survival were compared between race-matched and -unmatched donor groups for each organ. Race-matched Caucasian recipients experienced 1–3% improvement in mortality across most time points in lung, liver, and pancreas transplants, while Hispanics did not benefit. Matched African American recipients experienced 4–6% improvement in patient and graft survival in liver transplant but had 7–9% worse survival rates at 5 years in lung and pancreas transplants. Race-matching does not influence patient outcomes enough to factor into organ transplant offers. African American liver transplant recipients benefited the most. Matching was detrimental to African American lung and pancreas transplant recipients indicating there may be other factors influencing the outcomes of these transplants.