Racial–ethnic minorities with ESRD may be more likely than their White counterparts to experience a number of patient-related barriers to receipt of LDKT, including unmet concerns about the physical, psychological, and financial risks associated with LDKT; patients’ concerns about their ability to initiate LDKT discussions within their families; and less willingness to approach potential donors due to concerns about potential risks for living donors [41, 42, 46]. Studies of African-American and Hispanic patients have also identified poor LDKT knowledge, medical mistrust, and concerns about surgical risks of LDKT as potential barriers that may impede efforts to identify and approach potential live donors [37–40]. Alvaro et al. conducted focus groups of Hispanic patients and reported that lack of knowledge about living donation, concerns about potential harm to the donor, and expectations that a relative would initiate an offer to donate were identified as barriers to identifying and approaching potential donors [37]. A study by Pradel et al. also found that surgical concerns were associated with lower likelihood of considering LDKT, discussing LDKT with their family, or asking for a kidney in those receiving hemodialysis [40]. Evidence suggests that African-American potential recipients may also experience higher rates of psychological denial about the need for a kidney transplant [41, 43]. Results from a survey by Lunsford et al. suggest that African-Americans might cope with the need for a kidney transplant differently than non-African-Americans, and that African-American potential recipients may be less acceptable of and more likely to deny the need for a transplant [43]. This denial might affect persuasiveness or willingness to ask for live donation.

Concerns about the potential risks for living donors might also contribute to racial–ethnic minorities’ reported difficulties identifying and approaching potential donors within their families, social networks, and communities. Boulware et al. reported that African-American patients were concerned about potential burdening of family members, potential donors’ future health, and their future inability to donate a kidney to another family member who might need it, and feelings of guilt or coercing family members [41]. Within focus groups that included African-American and Asian potential transplant recipients, Waterman et al. also noted concerns about living donation, including feelings of guilt or indebtedness to the donor, harm or inconvenience to the donors, concerns that the potential donor might need the kidney later, and concerns over disappointing the donor if the transplant failed [42].

In addition to barriers encountered during donor identification , evidence suggests that higher rates of chronic illnesses, such as obesity, diabetes, and hypertension among racial–ethnic minorities may contribute to lower likelihood of completing the transplant evaluation and workup process. In addition, racial–ethnic minorities who are able to identify a suitable donor and who complete the transplant evaluation process might also encounter additional barriers to transplant surgery , such as HLA sensitization and immunological incompatibility due to limited availability of blood-type incompatible LDKT programs [81]. Racial–ethnic minorities who successfully receive transplants may also experience unique barriers that threaten the long-term success of LDKT . Burke et al. found that African-American race and presence of diabetes adversely affected 10-year patient and graft survival among kidney transplant recipients within a study conducted at a single transplant center [54]. Douzdijan et al. also found that kidney graft survival was adversely affected by African-American race for transplant recipients [55]. In a study of patients who previously received transplants, Foley et al. also reported that kidney graft survival rates were significantly lower in African-American versus White recipients [56].

Difficulty identifying potential living donors has been shown to be a major contributor to racial–ethnic disparities in receipt of LDKT . Racial–ethnic differences in attitudes (e.g., cultural, religious, and surgical concerns) about and willingness to participate in live donation, less communication about LDKT within families, and lower tolerance for economic risks of live donation have all been implicated as potential donor-related barriers contributing to disparities in living donation [38, 39, 57]. Boulware et al. demonstrated that mistrust in hospitals and concerns about discrimination, as well as surgical concerns about living donation were associated with less willingness to donate living organs to relatives as noted within a national household telephone survey of potential donors among the general public [38]. Robinson et al. demonstrated within a survey of African-American potential donors that attitudes and beliefs toward donation were associated with self-reported willingness to become a living donor [39].

Short- and long-term economic risks of live donation may be associated with less willingness to donate, particularly among minority groups already disproportionately burdened by financial pressures. While a majority of direct medical costs associated with living kidney donation are covered by Medicare and/or private health insurance, live donors may still be faced with additional costs associated with the donation process, including lost wages due to time away from work, incidental medical expenses, transportation and lodging, and hired caregiver or child-care costs [58–61]. A study examining the long-term impact of live donation found that 19 % of live donors who participated in the study reported moderate financial problems after donating, and 4 % reported severe financial problems (such as lost work time, medical bills not covered by insurance, and other out-of-pocket expenses) [58]. In a study of living donors in the US, participants reported that financial costs incurred by the donor averaged $ 837 and ranged from $ 0 to 28,906 [62]. Potential donors’ concerns about future insurability may also impact their willingness to donate. Findings from recent studies suggest that becoming a living donor may impact one’s ability to obtain life, health, and disability insurance [60, 63]. A study of living donors in the US found that while many insurance companies reported being willing to insure these individuals, a number of living donors have reported difficulties obtaining insurance coverage after donation [60]. Existing educational resources about LDKT may also lack important information that could alleviate minorities’ concerns about the potential short- and long-term economic burden of LDKT.

In addition to barriers that contribute to disparities in the identification of potentially willing donors, some minorities who are actually willing to donate may not be healthy enough (i.e., clinically suitable) to complete the donor evaluation and surgical processes. Reeves-Daniel et al. performed a study of unsuccessful live kidney donations and found that African-American potential donors were more likely to be excluded due to obesity or failure to complete the transplant evaluation [49]. Tankersely et al. performed a study of inpatient donor and recipient evaluations and found that African-American patients were less likely than Whites to identify clinically suitable potential live donors at the time of evaluations due to higher rates of previously undetected comorbid medical conditions, such as hypertension among them [50]. A study of patients referred for potential live kidney donation by Lunsford et al. found that African-Americans were more likely to be lost to follow-up than non-African-Americans due to higher rates of incompatible blood types, high body mass index, or ineligible recipients [51].

Racial–ethnic minorities who complete the evaluation and surgical processes may also experience long-term risks after the transplant surgery. African-American living donors may face increased risk of developing ESRD and may be more likely than White donors to need a kidney in the future. Gibney et al. found that future risk of developing ESRD might be more exaggerated in African-American versus White donors within a study using organ procurement and transplantation network (OPTN) data [64, 65]. In a study to assess potential racial differences in posttransplant kidney function for living donors, Doshi et al. found that postdonation serum creatinine levels were slightly higher for African-American donors compared to Whites [66]. In a study of OPTN and administrative data, Lentine et al. found that after kidney donation, African-American and Hispanic donors had an increased risk of hypertension, diabetes requiring drug therapy, and chronic kidney disease, compared with White donors [67]. Nogueira et al. also found that African-American living kidney donors experienced a high incidence of hypertension and a modest drop in kidney functioning post donation in a study of long-term donor outcomes [68]. Within a study of national trends and outcomes following live kidney donation, Segev et al. reported that surgical mortality from live donation was higher in African-American donors compared with White and Hispanic donors [69].

Racial–ethnic minorities’ poorer access to routine health care, lack of provider–patient and provider–family discussions regarding LDKT, and health-care providers’ perceptions about minority patients’ preferences and suitability for LDKT may be associated with lower rates of LDKT education and transplant referral for minority patients [27, 45–46]. Providers’ views about the benefits of transplantation and beliefs about reasons for racial–ethnic differences in access to transplantation may affect how (or whether) they present LDKT as a treatment option to racial–ethnic minority patients. Ayanian et al. conducted a survey of nephrologists in the US and reported that physicians were less likely to believe that transplantation improves survival for African-Americans than Whites [27]. African-American patients participating in the study were also less likely than White patients to report receiving some or a lot of information about transplantation. Within focus groups conducted to assess health-care professionals’ beliefs about barriers contributing to lower rates of donor identification for African-American patients, Shilling et al. revealed that providers noted lack of clinical suitability, financial concerns, reluctance to approach potential donors, surgical fears, medical mistrust, and less awareness of LDKT as potential barriers [45]. Suboptimal rates of patient–physician discussion and family–physician discussions about LDKT prior to ESRD may serve as additional barriers to donor identification among racial–ethnic minorities . Within a survey of African-Americans patients, spouses, and children, Boulware et al. found that despite most patients expressing desire for a transplant, only 68 % of patients and less than 50 % of their spouses had discussed transplantation with physicians [46]. These differences in provider–patient interactions may, in part, reflect variations in provider communication skills and cultural competence, knowledge about LDKT, and perceptions of patient suitability and preferences for LDKT.

Lower rates of transplant referrals and delayed receipt of nephrology subspecialty care prior to renal replacement therapy initiation have also been associated with higher rates of incomplete evaluations. Notably, Ayanian et al. found that African-American patients were less likely to be referred for evaluation at a transplant center, even after adjustment for patients’ preferences and expectations about transplantation, coexisting illnesses, or socioeconomic factors [21]. Health-care providers’ perceptions of patients’ suitability for LDKT (and their inherent biases about patients’ preferences for and adherence to medical therapies) may also lead to lower rates of transplant evaluation and higher rates of incomplete workups among minority potential recipients compared to Whites [21]. Ayanian et al. conducted a survey of nephrologists in the US and reported that physicians were less likely to believe that transplantation improves survival for African-Americans than Whites, and more likely to believe that disparities in rates of transplant were due to differences in patients’ preferences, availability of living donors, failure to complete evaluations, and comorbid illnesses [27]. Epstein et al. examined data from five US states and reported that among patients considered clinically appropriate for transplants, African-Americans were less likely than Whites to be referred for transplant evaluations [15]. Lower rates of preemptive LDKT referrals for racial–ethnic minority patients, which result in higher rates of dialysis initiation, might also contribute to higher rates of HLA sensitization and higher burden of medical complications for minorities that impede successful LDKT [70]. Kinchen et al. conducted a national study and found that late evaluations by a nephrologist were associated with greater burden and severity of chronic illnesses and were more common among African-American men than White men [71]. Reduced health-care access, including poor availability or utilization of routine follow-up medical care and less health insurance coverage may also contribute to suboptimal long-term clinical outcomes for minority patients and living donors who receive LDKT.

Population and community-level barriers , such as suboptimal education and poor awareness about the need for living donors, neighborhood resource deprivation, and high rates of chronic illnesses within minority families and social networks also contribute to disparities in LDKT. Suboptimal quality of educational information about LDKT and lack of decision support regarding LDKT as a treatment option may lead to less awareness about the benefits of and need for LDKT within minority communities. Alvaro et al. noted that Hispanic patients reported lack of knowledge about living donation as a barrier to identifying potential donors within their networks and communities [37]. In addition, because a majority of LDKT recipients receive kidneys donated by relatives or nonrelatives emerging from recipients’ close social networks, the disproportionately high burden of chronic diseases, particularly diabetes and hypertension, within racial–ethnic minorities’ families and social networks may reduce the potential donor pool for many minority potential recipients. Lei et al. reported familial clustering of kidney disease within a population-based study of patients with kidney disease [47]. A study by Gaylin et al. showed that comorbid medical conditions , such as cardiovascular disease and obesity (which are highly prevalent among US racial–ethnic minorities) were associated with lower transplant rates [72].

As evidenced by disproportionately lower kidney transplant rates in areas with higher degrees of poverty, patients and potential donors within minority populations may encounter more geographic and socioeconomic barriers to completing transplant workup. Volkova et al. found that neighborhood poverty was strongly associated with ESRD incidence, and increasing neighborhood poverty was associated with a greater disparity in renal disease rates between African-Americans and Whites [48]. Racial–ethnic disparities in community resource allocation and chronic disease burden may also contribute to racial–ethnic differences in kidney transplant rates. Stolzmann et al. found that lower community income and education levels were associated with lower likelihood of receiving transplants [73]. Within a study of United States Renal Data System (USRDS) and US census data, Hall et al. demonstrated that high levels of neighborhood poverty were associated with lower transplant rates among Asians and Pacific Islanders compared with Whites, and the degree of disparity worsened as rates of neighborhood poverty worsened [74].

Emerging research suggests lower health literacy rates within racial–ethnic minority populations may also serve as an important barrier in referral for and completion of transplant evaluations. Grubbs et al. found that inadequate health literacy among hemodialysis patients was associated with lower rates of referral for transplant evaluations [75]. It is postulated that health-care providers may be less willing to refer patients with inadequate health literacy due to concerns about patients’ inability to complete required steps necessary for transplanted graft survival [75]. Minimal availability and use of language and health literacy-appropriate educational resources about LDKT may contribute to minorities’ higher rates of incomplete LDKT workups.