Review Article

Review of ethnic disparities in access to renaltransplantation

Joshi S, Gaynor JJ, Ciancio G. Review of ethnic disparities in access torenal transplantation.

Abstract: Renal transplantation is the gold standard treatment forpatients with end-stage renal disease and is associated with severaladvantages over dialysis, including increased quality of life, reducedmorbidity and mortality, and lower healthcare costs. Barring theconstraints of a limited organ supply, the goals of the patient care shouldfocus on attaining renal transplantation while minimizing, or eveneliminating, time spent on dialysis. Disparities in access to renaltransplantation between African Americans and Caucasians have beenextensively documented, with African Americans having significantlypoorer access. There is a growing corpus of literature examining thedeterminants of reduced access among other racial ethnic minoritygroups, including Hispanics. These determinants include patient andphysician preference, socioeconomic status, insurance type, patienteducation, and immunologic factors. We review these determinants inaccess to renal transplantation in the United States among all races andethnicities.

Shivam Joshi, Jeffrey J. Gaynorand Gaetano Ciancio

Department of Surgery, University of Miami

Miller School of Medicine, Miami, FL, USA

Key words: access – African Americans –

Hispanics – kidney – transplantation

Corresponding author: Gaetano Ciancio, M.D.,

University of Miami Miller School of Medicine,

PO Box 012440, Miami, FL, 33101

Tel: (305) 355 5111; fax: (305) 355 5134;

e-mail: gciancio@med.miami.edu

Conflict of interest: None.

Accepted for publication 9 May 2012

Renal transplantation is the gold standard treat-ment for patients with end-stage renal disease(ESRD) and is associated with several advantagesover dialysis, including increased quality of life,reduced morbidity and mortality, and lowerhealthcare costs (1–4). Morbidity associated withdialysis includes progression of cardiovascular dis-ease, osteodystrophy, anemia, and other long-termside effects. Increasing time spent on dialysis hasbeen shown to negatively affect outcomes aftertransplantation (5, 6). Barring the constraints of alimited organ supply, the goals of the patient careshould focus on attaining renal transplantationwhile minimizing, or even eliminating, time spenton dialysis (5).

Access to renal transplantation can be quantita-tively defined in a variety of ways. Several populardefinitions include the percentage of dialysispatients being placed on the waiting list, the per-centage of patients on dialysis that were preemp-tively listed, the distribution of times-to-waitlistingafter initiating dialysis (0 for preemptively listedpatients), and the distribution of times-to-renaltransplant after waitlisting (7, 8). Disparities in

access to renal transplantation between AfricanAmericans and Caucasians have been extensivelydocumented, with African Americans having sig-nificantly poorer access (9–14). There is a growingcorpus of literature examining the determinants ofreduced access among other racial ethnic minoritygroups (15–17). In this article, we review the recentliterature regarding disparities in access to renaltransplantation in the United States among allraces and ethnicities.

Deceased donor renal transplantation among

African Americans

Disparities in access to transplantation betweenAfrican Americans and Caucasians have a long his-tory, with discrepancies first being identified in1978, but not formally recognized by the federalgovernment until 1990 when the Office of theInspector General of the Department of Health andHuman Services stated that “organ distributionpractices fall short of Congressional and profes-sional expectations” and that “blacks…wait almosttwice as long as whites for a first transplant even

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© 2012 John Wiley & Sons A/S

Clin Transplant 2012 DOI: 10.1111/j.1399-0012.2012.01679.x

when blood type, age, immunological, and loca-tional factors are taken into account” (18, 19).African Americans still are less likely than whitesto be referred for transplant evaluation, and whenreferred, they are less likely to be registered fortransplantation, progress through the waiting list,and ultimately receive a renal transplant even whencontrolling for other variables (1, 9, 10, 13, 20, 21).Currently, African Americans account for over 37%of the US dialysis population but only receive 19.1%of all kidney transplants (8). In 2010, the projectedmean wait time for African Americans was 3.7 yrcompared to 2.2 yr for whites (8). Furthermore,whites are more than twice as likely as AfricanAmericans to be preemptively listed for transplanta-tion and are more likely to report that they hadlearned about preemptive transplantation (13, 20).The transplantation process involves a series of

steps including determination of medical appropri-ateness, interest in transplantation, transplant eval-uation, placement on a waiting list, and ultimatelyreceipt of an organ. Alexander and Sehgal showedthat African Americans are more likely than whitesto remain stationary at the first two steps (22).Although this study did not investigate the causesfor disparity, several other studies have attemptedto explain it.Some explanations for the disparity have

focused on the preferences and attitudes shared byAfrican Americans. African Americans on dialysisfeel better and have higher overall energy levelsand health status than whites, providing less moti-vation to pursue transplantation (23). In fact, thedisparity is greatest for the youngest and healthiestblacks, who are nearly 50% and 40% less likely tobe placed on the waiting list than their white coun-terparts with ESRD, respectively (24). Finally,Ayanian et al. (13) showed that that AfricanAmerican patients were less likely than whitepatients to want a transplant and that they wereless likely to be very certain of their preference.Gordon performed a unique anthropological

study using interviews with open-ended ques-tions and identified three important socioculturaland ethnomedical beliefs that influence AfricanAmericans’ decisions for treatment of ESRD andtheir resultant implications for access to transplan-tation (25). Gordon found that the most commonreason for remaining on dialysis was that manyyoung African Americans considered themselves tobe in good health, as mentioned earlier. The secondmost common reason was a fear of being “cut on,”which has been noted in another paper examiningAfrican American preferences toward breast can-cer treatment (25, 26). This fear stems from theidea that surgery leads to further surgery and from

the folk notion that exposure of the body to airmakes the person vulnerable to natural and super-natural disease processes (25, 27). The third mostcommon reason was witnessing unsuccessful trans-plant recipients returning to a dialysis unit andincreasing their own doubt about the success of afuture transplant (25).

However, the patient is not the only one toblame, as the physician plays an important role inaccess to transplantation. Ayanian showed thatAfrican Americans are less likely to be referred forevaluation at a transplant center and less likely tobe placed on a waiting list for transplant within18 months after start of dialysis when compared totheir white counterparts, even after adjusting forpatients’ preferences (13). This discrepancy persistseven among African Americans who are verycertain that they wanted a transplant (13). Not onlyare African Americans less likely to be referred fortransplant evaluation when they are considered tobe appropriate candidates for transplantation, butwhites are more likely to be referred for transplantevaluation even when they are considered inappro-priate candidates for transplantation (10).

In another study, Ayanian et al. (28) found thatnephrologists are less likely to believe transplanta-tion improves survival for black patients when com-pared to white patients, although they weresimilarly likely to believe it improves quality of lifefor each group. In addition, the most commonlycited reasons by nephrologists as to why AfricanAmericans are less likely than whites to be evalu-ated for transplant included patient preferences,availability of living donors, and failure to completethe transplant workup (28). Communication seemsto play an important role as African Americanswere less likely to report that their nephrologist pro-vided all the medical information they desired, thatthey trusted their doctor’s judgment about theirmedical care, or that a physician had recommendedtransplantation as an option to them (13).

Living donor renal transplantation among African

Americans

Living donor renal transplantation (LDRT) isassociated with improved initial graft function,decreased rates of acute rejection, and longer graftsurvival than deceased donor renal transplantation(DDRT) (29). After attempting to adjust for socio-economic status and clinical characteristics, Goreet al. (30) showed that African Americans andthose of other race/ethnicity (Asian Americans,Pacific Islanders, Native Americans, Alaskannatives, etc.) had half the odds of undergoingLDRT as white recipients. Other studies have

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confirmed decreased rates of LDRT among AfricanAmericans (1, 10).

African Americans may undergo LDRT at alower rate for numerous reasons. For one, they areless likely to identify potential living donors thantheir white counterparts (31, 32). One studyshowed that African Americans were less likely tobe living or deceased organ donors because offewer family discussions regarding live organ dona-tion and the possibility of not receiving lifesavingtherapies in deceased organ donation (33). Whenpotential African American donors are identified,they are more likely to be excluded because ofpreviously undiagnosed comorbidities (31).

Another reason may be the low rates of patient–physician and family–physician discussions ofLDRT (34). In as much as the physician is impor-tant in providing access to DDRT for patients,the physician similarly plays an important role inproviding access to LDRT. Even when AfricanAmerican patients desired transplantation, apatient–physician discussion did not occur innearly one-third of instances (34).

African Americans also cope differently thanwhites; they are more likely to deny the need for atransplant and are less accepting of their situation,further decreasing the likelihood of having a livedonor (35). With fewer living donors available,African Americans are proportionally more depen-dent on deceased donor transplants.

Little is known regarding the determinants ofLDRT among the other minorities. However, ithas been shown that Hispanics are receptive toLDRT and are willing to ask family members foran organ donation (36, 37).

Disparities among Hispanics, Native Americans,

and Asians

Studies focusing on access to transplantationamong Hispanics, Asians, and Native Americansare relatively limited in number (38). However,existing studies show that discrepancies exist inseveral important steps of the transplant process.

Hispanics and Asians, and not African Americans,are more likely to start dialysis late, even aftercontrolling for other socioeconomic, clinical, anddemographic risk factors, when compared to Cauca-sians (defined as a GFR <5 mL/min, odds ratio =1.47 and 1.66, respectively) (39). In African Ameri-cans, initiation of renal replacement therapy in laterstages of disease was more a result of socioeconomic,clinical, and demographic factors than race alone(39).

Keith et al. (7) showed that Hispanics were notonly less likely to be preemptively listed, but also

spent more time on dialysis before being listed fortransplantation. Hispanics and patients identifyingthemselves as “Asian or other” were only 59% and55% as likely as whites, respectively, to be preemp-tively listed (20). An older analysis of procedureutilization in California showed that whites had ahigher likelihood of receiving a kidney transplantthan Hispanics (40).A recent study using questionnaires of hypo-

thetical patient scenarios showed that nephrolo-gists were less likely to recommend Asians, but notAfrican Americans, for renal transplantation (41).The reduced access to renal transplantation of

Native Americans is the result of lower rates inwaitlisting and lower rates of transplantationamong those already wait-listed (42). Sequist et al.showed that Native Americans undergoing dialysiswere more likely than whites to be identified aspotential candidates for transplantation andreferred to a transplant center. Hispanics wereequally as likely as whites to be considered renaltransplant candidates. But once referred to a trans-plant center, Native Americans and Hispanics wereless likely to be placed on a waiting list and muchless likely to undergo transplantation (17). EvenNative Americans who do undergo transplantationhave been known to experience greater delays fromonset of treated ESRD to time of transplantationthan their white counterparts (43).Another way to look at the issue is to compare

the ratio of the proportion of an ethnic groupreceiving a DDRT to the proportion of the sameethnic groups being wait-listed. In an ideal system,all ethnic groups should equally receive an organand have a distribution of organs similar to theirdistribution on the waiting list. For example, aratio >1 indicates that more patients of that ethnicgroup received organs than would be expectedfrom that group’s proportion on the waiting list.A ratio <1 would indicate that a particular ethnic-ity is receiving fewer organs than would beexpected. Fan et al. showed that in 2008, Asians,Hispanics, and African Americans all receivedfewer organs than would have been expected bytheir distribution on the waiting list alone (ratios0.72, 0.85, and 0.91, respectively), while whitesreceived more organs (ratio 1.22).Analyses of the determinants of reduced access

to kidney transplantation among minorities arealso limited. However, Hall et al. (42) showed thatreduced transplant rates from the initiation ofdialysis could be attributed to measurable factorsto varying extents among each minority group.For Hispanics, the largest fractions of disparitywere explained by health insurance coverage andzip code poverty (14%) and regional organ avail-

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Disparities in access to transplantation

ability (14%). For American Indians/AlaskanNatives, the largest fraction was attributed toadjustments for health insurance coverage and zipcode poverty (23%).

Organ allocation policy

Current organ allocation practices are based onthe United Network for Organ Sharing’s (UNOS)points system, which takes into account immuno-logic and non-immunologic factors.African Americans are more likely to have ABO

types associated with longer waiting times becausethe donor pool of organs is predominantly (75.7%)white (44). However, ABO identity alone does notexplain all of the association of African Americanrace with increased waiting times; Kallich andcolleagues showed that African Americans withinblood groups still wait between 23% and 60%longer than their white counterparts (45).Earlier studies have shown that African American

transplant candidates are also more likely to dem-onstrate significant anti-major histocompatibilitycomplex reactivity (pre-sensitization or elevatedpanel reactive antibodies) than whites, which alsoincreases waiting time (45, 46). Patients who are onthe wait list for a deceased donor transplant andare pre-sensitized to 20% or more of potentialdonors wait significantly longer (47). However, amore recent study has shown that sensitizationwhen combined with histocompatibility (asassessed by ABO blood group) only explained amodest fraction of the delay in transplantationobserved among blacks (8%), Asian (3%), andHispanics (7%), when compared to whites (42).Another factor influencing access to organs is

HLA matching. It is well known that HLA match-ing between donors and recipients is a strong indi-cator of post-transplant graft survival (48).However, the distribution of HLA antigens is dif-ferent according to races (49). Dependence onHLA matching to optimize graft survival hasdecreased with the advent of calcineurin inhibitorsand other improved immunosuppressants, suggest-ing less emphasis of HLAmatching in organ alloca-tion policies. In 1995, allocation priority for HLA-A matching was eliminated, and it was later pre-dicted that elimination of HLA-B matching wouldfurther reduce racial discrepancies in organ distri-bution without significantly affecting graft loss(50). In 2003, the national kidney allocation policywas changed to eliminate priority for HLA-B simi-larity leaving current algorithms to only take intoaccount similarity at the HLA-DR locus. Analysiscomparing the six yr after the policy change to thesix yr before the policy change have shown a sub-

stantial increase in transplantation amongminoritieswithout a decrease in two-yr graft survival (51).After the policy change, African Americans, Hispan-ics, Asians, and Native Americans received 33%,53%, 50%, and 34% more DDRT compared towhites (8% increase, p < 0.0001) (51).

Health literacy and linguistic isolation

Decreased health literacy has also been shown todecrease access to transplant evaluation in whitesand blacks (52). Grubbs et al. showed in an under-powered study that blacks do have lower scores onhealth literacy tests when compared to whites, butthe difference is not statistically significant betweenthe two races.

Several studies have suggested that delays inreceiving a deceased donor transplant amongAsians, Pacific Islanders, and Hispanics can beattributed to their living in areas with a higherdegree of household linguistic isolation (53–57).The US Census defines household linguistic isola-tion as a household in which all members 14 yr ofage and over speak a non-English language andalso speak English less than “very well” (58).

Distance and poverty

It has been previously demonstrated that blacksliving in rural areas are less likely to be wait-listedand transplanted than those residing in urbanareas (59). An explanation for these differenceswas thought to be that greater distances from atransplant center reduced access to transplanta-tion, but placement on the kidney transplant wait-ing list has not been associated with distance to thenearest transplant center thus far (12, 60).

Time to transplantation is longer among bothblack and white patients with ESRD who lived inzip code areas with � 75% of black residents (14).It has been shown that a better predictor for accessto transplantation among black patients may beneighborhood poverty levels. As neighborhoodpoverty levels increase, the likelihood of beingwait-listed decreased for blacks when comparedwith whites. And, in the poorest neighborhoods,blacks are 57% less likely to be wait-listed thanwhites (12). This is not the first time as associationhas been made between poverty and access to carein the spectrum of chronic kidney disease. Forexample, neighborhood poverty is strongly associ-ated with higher ESRD incidence for both blacksand whites (61). Furthermore, blacks are morelikely to develop ESRD with increasing povertythan whites (61). This suggests that blacks maysuffer more from a lower socioeconomic status

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throughout the progression of chronic kidneydisease when compared to their white counterparts.

Insurance and comorbidities

All patients with ESRD are entitled to lifesavingtreatment through the 1972 Congressional Actentitled “The United States Medicare ESRDProgram.” Nonetheless, it has long been recog-nized that Medicare coverage is associated withdelayed referrals to a transplant center, prolongedexposure to pre-listing dialysis, and reduced ratesof preemptive listing when compared to privateinsurance, regardless of race (7, 20, 62). The detri-mental effects of Medicare are nearly eliminatedamong those who were listed at an age >65 yr (7).This seems largely attributable to the change ineligibility rules at the age of 65 yr. Medicare is animportant source of insurance for patients withESRD of all ages. For patients younger than 65 yrand who have ESRD, they must wait three monthson dialysis before becoming Medicare eligible.At the age of 65 yr, all citizens are entitled to thebenefits of Medicare without an initial waitingperiod. The eligibility requirements significantlyaffect access to transplantation for patients withESRD under the age of 65, regardless of race.

When analyzing the differences between races,minority (African American, Hispanic, and other)patients dependent on Medicare still had lowerrates of preemptive listing and longer durations ofdialysis before transplantation than whites onMedicare (7). More importantly, this trendpersisted even when comparisons were made usingpatients with private insurance, suggesting a uni-versal racial disparity in access (7).

Some authors attribute differences in access tocare among races to obesity (11, 63). Obesity is agrowing epidemic affecting nearly every aspect ofthe United States healthcare system (64). Minoritypopulations consistently have rates of obesityhigher than their white counterparts; 28% ofHispanics and 36% of non-Hispanic blacks wereobese, compared to 21% of non-Hispanic whitesbeing obese (65). Recent research has shown thatthe likelihood of being bypassed when an organbecomes available increased and the likelihood ofreceiving a transplant decreased in proportion withincreasing levels of obesity regardless of ethnicity(66). However, obesity has not been identified asan ethnicity-specific determinant of reduced accessto transplantation (38, 42).

Renal transplantation in obese patients is associ-ated with reduced risks and increased benefitswhen compared to dialysis and medical manage-ment (67–69).

Improving access

No racial or ethnic group should be at any disad-vantage in accessing transplantation, especiallyconsidering the presence of a Medicare mandatedevaluation of all dialysis patients for transplanteligibility. However, disparities do exist andrequire further efforts regarding their determinantsand possible solutions. As shown in this review,African Americans have been more extensivelystudied than any other minority, including Hispan-ics. Hispanics deserve more large-scale, in-depthresearch studies evaluating discrepancies in accessto care as they are the largest minority in the Uni-ted States (16.3% of the population) and havean incidence of ESRD 1.5 times higher than non-Hispanics (8, 70). Research among Hispanicsshould also be subdivided according to countryof origin as they are an extremely heterogenousethnicity (Mexicans, Salvadorian, Cubans, etc.).Native Americans and Asians should also undergofurther investigations in areas where they areconcentrated.Future strategies on increasing rates of trans-

plantation should also be ethnicity-specific. ForHispanics and Asians, this means overcominglinguistic isolation by appropriately using inter-preters and culturally appropriate educationalmaterials (42, 56). Regional organ availability canalso be improved for Hispanics by increasingawareness regarding the benefits of organ dona-tion (42). Efforts have been made to increase theavailability of organs, especially those from andfor minority populations through the NationalMinority Organ Tissue Transplant Education Pro-gram (71, 72). However, the gains from increasedawareness do not meet current demand and havenot eliminated disparities in access. Young andhealthy blacks are especially important targets asthey are likely to gain the most from improved sur-vival, quality of life, and cost reductions (24, 73).In addition, more discussions should be held withAfrican Americans and their families regardingLDRT (34).Although it is impossible to increase the supply

of organs to meet current demand, it is possible toincrease the percentage of patients preemptivelylisted. “Transplant First” is an example of a rela-tively new initiative by the US National Kidneyfoundation to increase access and frequency of pre-emptive kidney transplantation among all races(74). The biggest room for improvement is withinminority patients on Medicare that are under theage of 65 and those who have a high school educa-tion or less (7, 74). Reducing the exposure to dialysis

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Disparities in access to transplantation

improves both pre- and post-transplant outcomes ofall patients, including minorities (74).

Authors’ contributions

SJ: concept, initial draft; JG: critical revision of thearticle; GC: approval of the article.

References

1. YOUNG CJ, GASTON RS. Renal transplantation in blackAmericans. N Engl J Med 2000: 343: 1545.

2. EVANS RW, MANNINEN DL, GARRISON LP et al. The qual-ity of life of patients with end-stage renal disease. N EnglJ Med 1985: 312: 553.

3. EGGERS PW. Comparison of treatment costs between dial-ysis and transplantation. Semin Nephrol 1992: 12: 284.

4. WOLFE RA, ASHBY VB, MILFORD EL et al. Comparison ofmortality in all patients on dialysis, patients on dialysisawaiting transplantation, and recipients of a first cadaverictransplant. N Engl J Med 1999: 341: 1725.

5. MANGE KC, WEIR MR. Preemptive renal transplantation:why not? Am J Transplant 2003: 3: 1336.

6. MEIER-KRIESCHE HU, KAPLAN B. Waiting time on dialysisas the strongest modifiable risk factor for renal transplantoutcomes: a paired donor kidney analysis. Transplantation2002: 74: 1377.

7. KEITH D, ASHBY VB, PORT FK, LEICHTMAN AB. Insurancetype and minority status associated with large disparitiesin prelisting dialysis among candidates for kidney trans-plantation. Clin J Am Soc Nephrol 2008: 3: 463.

8. U.S. Renal Data System. USRDS 2010 Annual DataReport: Atlas of Chronic Kidney Disease and End-StageRenal Disease in the United States. Bethesda, MD:National Institutes of Health, National Institute of Diabe-tes and Digestive and Kidney Diseases, 2010.

9. EGGERS PW. Racial differences in access to kidney trans-plantation. Health Care Financ Rev 1995: 17: 89.

10. EPSTEIN AM, AYANIAN JZ, KEOGH JH. Racial disparities inaccess to renal transplantation: clinically appropriate ordue to underuse or overuse? N Engl JMed 2000: 343: 1537.

11. ALEXANDER GC, SEHGAL AR. Barriers to cadaveric renaltransplantation among blacks, women, and the poor.JAMA 1998: 280: 1148.

12. PATZER RE, AMARAL S, WASSE H, VOLKOVA N, KLEINBAUM

D, MCCLELLAN WM. Neighborhood poverty and racialdisparities in kidney transplant waitlisting. J Am SocNephrol 2009: 20: 1333.

13. AYANIAN JZ, CLEARY PD, WEISSMAN JS, EPSTEIN AM. Theeffect of patients’ preferences on racial differences in accessto renal transplantation. N Engl J Med 1999: 25: 1661.

14. RODRIGUEZ RA, SEN S, MEHTA K, MOODY-AYERS S,BACCHETTI P, O’HARE AM. Geography matters: relation-ships among urban residential segregation, dialysis facilities,and patient outcomes. Ann Intern Med 2007: 146: 493.

15. HALL YN, SUGIHARA JG, GO AS, CHERTOW GM. Differen-tial mortality and transplantation rates among Asians andPacific Islandres with ESRD. J Am Soc Nephrol 2005: 16:3711–20.

16. HALL YN, O’HARE AM, YOUNG BA, BOYKO EJ, CHERTOW

GM. Neighborhood poverty and kidney transplantationamong US Asians and Pacific Islanders with end-stagerenal disease. Am J Transplant 2008: 8: 2402–9.

17. SEQUIST TD, NARVA AS, STILES SK, KARP SK, CASS A,AYANIAN JZ. Access to renal transplantation among

American Indians and Hispanics. Am J Kidney Dis 2004:44: 344–52.

18. CALLENDAR CO, HALL LE, YEAGER CL, BARBER JB Jr,DUNSTON GM, PINN-WIGGINS VW. Organ donation andblacks. A critical frontier. N Engl J Med 1991: 325: 442.

19. Office of the Inspector General. The Distribution ofOrgans and Transplantation: Expectations and Practices.Washington, DC: Office of Analysis and Inspections, USDepartment of Health and Human Services Publication,1991. OE1-01-89-0050.

20. KASISKE BL, LONDON W, ELLISON MD. Race and socioeco-nomic factors influencing early placement on the kidneytransplant waiting list. J Am Soc Nephrol 1998: 9: 2142.

21. OZMINKOWSKI RJ, WHITE AJ, HASSOL A, MURPHY M.Minimizing raical disparity regarding receipt of a cadaverkidney transplant. Am J Kidney Dis 1997: 30: 749.

22. ALEXANDER GC, SEHGAL AR. Why hemodialysis patientsfail to complete the transplantation process. Am J KidneyDis 2001: 37: 321.

23. HICKS LS, CLEARY PD, EPSTEIN AM, AYANIAN JZ. Differ-ences in health-related quality of life and treatment prefer-ences among black and white patients with end-stage renaldisease. Qual Life Res 2004: 13: 1129.

24. GARG PP, DIENER-WEST M, POWE NR. Reducing raicaldisparities in transplant activation: whom should wetarget? Am J Kidney Dis 2001: 37: 921.

25. GORDON EJ. Patients’ decisions for treatment of end-stagerenal disease and their implication for access to transplan-tation. Soc Sci Med 2001: 53: 971.

26. MATTHEWS HF, LANNIN DR, MITCHELL JP. Coming toterms with advanced breast cancer: black women’s narra-tives from eastern North Carolina. Soc Sci Med 1994: 38:789.

27. SNOW LF. Walkin’ over Medicine. Boulder, CO: WestviewPress, 1991.

28. AYANIAN JZ, CLEARY PD, KEOGH JH, NOONAN SJ, DAVID-KASDAN JA, EPSTEIN AM. Physicians’ beliefs about racialdifferences in referral for renal transplantation. Am J Kid-ney Dis 2004: 43: 350.

29. CECKA M. Clinical outcome of renal transplantation.Factors influencing patient and graft survival. Surg ClinNorth Am 1998: 78: 133.

30. GORE JL, DANOVITCH GM, LITWIN MS, PHAM PT, SINGER

JS. Disparities in the utilization of live donor renal trans-plantation. Am J Transplant 2009: 9: 1124.

31. TANKERSLEY MR, GASTON RS, CURTIS JJ et al. The livingdonor process in kidney transplantation: influence of raceand comorbidity. Transplant Proc 1997: 29: 3722.

32. SCHWEITZER EJ, YOON S, HART J et al. Increased livingdonor volunteer rates with a formal recipient familly edu-cation program. Am J Kidney Dis 1993: 22: 739.

33. MINNIEFIELD WJ, YANG J, MUTI P. Differences in attitudestoward organ donation among African Americans andWhites in the United States. J Natl Med Assoc 2001: 90:372.

34. BOULWARE LE, MEONI LA, FINK NE et al. Preferences,knowledge, communication and patient-physician discus-sion of living kidney transplantation in African Americanfamilies. Am J Transplant 2005: 5: 1503.

35. LUNSFORD SL, SIMPSON KS, CHAVIN KD et al. Racialdifferences in coping with the need for kidney transplanta-tion and willingness to ask for live organ donation. Am JKidney Dis 2006: 47: 324.

36. ALVARO EM, SIEGEL JT, TURCOTTE D. Living kidney dona-tion among Hispanics: a qualitative examination of barri-ers and opportunities. Prog Transplant 2008: 18: 243.

6

Joshi et al.

37. SIEGEL JT, ALVARO EM, HOHMAN ZP, MAURER D. “Canyou spare an organ?”: exploring Hispanic Americans’ will-ingness to discuss living organ donation with loved ones.Health Commun 2011: 26: 754.

38. HALL YN. Understanding racial differences in deceased-donor kidney transplantation: geography, poverty, lan-guage, and health insurance coverage. Dial Transplant2011: 40: 401.

39. KAUSZ AT, OBRADOR GT, ARORA P, RUTHAZER R, LEVEY

AS, PEREIRA BJ. Late initiation of dialysis among womenand ethnic minorities in the United States. J Am SocNephrol 2000: 11: 2351–7.

40. GIACOMINI MK. Gender and ethnic differences in hospital-based procedure utilization in California. Arch InternMed 1996: 156: 1217–24.

41. THAMER M, HWANG W, FINK NE. U.S. Nephrologists’ atti-tudes towards renal transplantation: results from anational survey. Transplantation 2001: 71: 281–8.

42. HALL YN, CHOI AI, XU P, O’HARE AM, CHERTOW GM.Racial ethnic differences in rates and determinants ofdeceased donor kidney transplantation. J Am Soc Nephrol2010: 22: 743–51.

43. NARVA A, STILES S, KARP S, TURAK A. Access of NativeAmericans to renal transplantation in Arizona and NewMexico. Blood Purif 1996: 14: 293–304.

44. U.S. Organ Procurement and Transplantation Networkand the Scientific Registry of Transplant Recipients. 2009Annual Report: Transplant Data 1999–2008. Rockville,MD: U.S. Department of Health and Human Services,Health Resources and Services Administration, Health-care Systems Bureau, Division of Transplantation, 2009.

45. KALLICH JD, ADAMS JL, BARTON PL, SPRITZER KL. Accessto Cadaveric Kidney Transplantation. Santa Monica, CA:RAND, 1993.

46. YOUNG CJ, GASTON RS. African Americans and renaltransplantation: disproportionate need, limited access, andimpaired outcomes. Am J Med Sci 2002: 323: 94.

47. 1998 Annual Report of the U.S. Scientific Registry forTransplant Recipients and the Organ Procurementand Transplantation Network: Transplant Data: 1988–1997. Richmond, VA: United Network for Organ Sharing,1999.

48. HELD PJ, KAHAN BD, HUNSICKER LG et al. The impact ofHLA mismatches on the survival of first cadaveric kidneytransplants. N Engl J Med 1994: 331: 765–70.

49. BEATTY PG, MORI M, MILFORD E. Impact of racial geneticpolymorphism on the probability of finding an HLA-matched donor. Transplantation 1995: 60: 778.

50. ROBERTS JP, WOLFE RA, BRAGG-GRESHAM JL. Effect ofchanging the prioritiy for HLA matching on the rates andoutcomes of kidney transplantation in minority groups. NEngl J Med 2004: 350: 545.

51. ASHBY VB, PORT FK, WOLFE RA. Transplanting kidneyswithout points for HLA-B matching: consequences for thepolicy change. Am J Transplant 2011: 11: 1712.

52. GRUBBS V, GREGORICH SE, PEREZ-STABLE EJ, HSU CY.Health literacy and access to kidney transplantation. ClinJ Am Soc Nephrol 2009: 4: 195.

53. KAGAWA-SINGER M, POURAT N. Asian American and Paci-fic Islander breast and cervical carcinoma screening ratesand healthy people 2000 objectives. Cancer 2000: 89: 696.

54. PIPPINS JR, ALEGRIA M, HAAS JS. Association betweenlanguage proficiency and the quality of primary careamong a national sample of insured Latinos. Med Care2007: 45: 1020.

55. FLORES G, TOMANY-KORMAN SC. The language spoken athome and disparities in medical and dental health, access

to care, and use of services in US children. Pediatrics 2008:121: e1703.

56. FLORES G. Language barriers to health care in the UnitedStates. N Engl J Med 2006: 355: 229.

57. SNYDER RE, CUNNINGHAM W, NAKAZONO TT, HAYS RD.Access to medical care reported by Asians and PacificIslanders in a West Coast physician group association.Med Care Res Rev 2000: 57: 196.

58. U.S. Buerea of the Census. Racial and Ethnic ResidentialSegregation in the United States: 1980–2000, http://www.census.gov/hhes/www/housing/housing_patterns/hous-ing_paterns.html, Accessed August 27, 2010.

59. O’HARE AM, JOHANSEN KL, RODRIGUEZ RA. Dialysis andkidney transplantation among patients living in rural areasof the United States. Kidney Int 2006: 69: 343.

60. TONELLI M, KLARENBACH S, MANNS B et al. Residencelocation and likelihood of kidney transplantation. CMAJ2006: 175: 478.

61. VOLKOVA N, MCCLELLAN W, KLEIN M et al. Neighbor-hood poverty and racial differences in ESRD incidence. JAm Soc Nephrol 2008: 19: 356.

62. BUTKUS DE, MEYDRECH EF, RAJU SS. Racial differences inthe survival of cadaveric renal allografts. Overridingeffects of HLA matching and socioeconomic factors.N Engl J Med 1992: 327: 840.

63. SOUCIE JM, NEYLAN JF, MCCLELLAN W. Race and sex dif-ferences in the identification of candidates for renal trans-plantation. Am J Kidney Dis 1992: 19: 414.

64. OGDEN CL, CARROLL MD, CURTIN LR, MCDOWELL MA,TABAK CJ, FLEGAL KM. Prevalence of overweight andobesity in the United States, 1999–2004. JAMA 2006: 295:1549.

65. Centers for Disease Control and Prevention (CDC).Differences in prevalence of obesity among black, white,and Hispanic adults – United States, 2006–2008. MMWRMorb Mortal Wkly Rep 2009: 58: 740.

66. SEGEV DL, SIMPKINS CE, THOMPSON RE, LOCKE JE,WARREN DS, MONTGOMERY RA. Obesity impacts access tokidney transplantation. J Am Soc Nephrol 2008: 19: 349.

67. PELLETIER SJ, MARASCHIO MA, SCHAUBEL DE et al. Sur-vival benefit of kidney and liver transplantation for obesepatients on the waiting list. Clin Transpl 2003: 77.

68. MARKS WH, FLORENCE LS, CHAPMAN PH, PRECHT AF,PERKINSON DT. Morbid obesity is not a contraindicationto kidney transplantation. Am J Surg 2004: 187: 635.

69. GLANTON CW, KAO TC, CRUESS D, AGODOA LY, ABBOTT

KC. Impact of renal transplantation on survival in end-stage renal disease patients with elevated body mass index.Kidney Int 2003: 63: 647.

70. HUMES KR, JONES NA, RAMIREZ RR. Bureau of theCensus: Overview of Race and Hispanic Origin: 2010.Washington, DC: US Department of Commerce, Econom-ics and Statistics Administration, US Census Bureau, 2011.

71. CALLENDER C, BURSTON B, YEAGER C, MILES P. A nationalminority transplant program for increasing donation rates.Transplant Proc 1997: 29: 1482.

72. CALLENDER CO, HALL MB, BRANCH D. An assessment ofthe effectiveness of the Mottep model for increasingdonation rates and preventing the need for transplanta-tion–adult findings: program years 1998 and 1999. SeminNephrol 2001: 21: 419.

73. EGGERS PW. Effect of transplantation on the Medicareend-stage renal disease program. N Engl J Med 1988: 318:223.

74. DAVIS CL. Preemptive transplantation and the transplantfirst initiative. Curr Opin Nephrol Hypertens 2010: 19:592.

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Disparities in access to transplantation