The objective of this study was to determine whether racial differences in access to renal transplantation are explained by patients' preferences. The study sample was identified from the end stage renal disease (ESRD) Networks in Alabama, southern California, Michigan, and the mid-Atlantic region. All newly diagnosed patients with end stage renal disease (ESRD) between 18 and 54 years of age who had begun to receive maintenance treatment with dialysis during the period from May 1996 to June 1997 (May 1996 to September 1997 for patients in Alabama) were included. Data were derived from the ESRD Networks, the United Network for Organ Sharing, and the Health Care Financing Administration, as well as from patient interviews. Patients were asked whether they had received a kidney transplant, how they rated their treatment preferences and the quality of their care, and how they rated their overall health, energy level, emotional well-being, physical activity, social activity, and the burden of kidney disease on daily life.

Patients were interviewed at least 9 months after initiation of dialysis. Ten black women (2.6%), 48 white women (13.6%), 15 black men (4.5%) and 52 white men (16.4%) had received kidney transplants during this period; 1 black women (0.3% of patients not receiving transplants from living donors), 20 white women (6.1%), 7 black men (2.1%), and 20 white men (7.0%) received kidney transplants from autopsy donors.

Black patients were less likely to want a kidney transplant (78% of blacks versus 82% of whites), were less likely to be very certain about this preference (61% of blacks versus 70% of whites), and were less likely to expect that their quality of life would improve with transplantation (85% of blacks versus 91% of whites). Although several of these comparisons resulted in statistically significant differences, the authors assessed these differences to be "relatively small."

Black patients were also less likely to report positive assessments of their medical care in certain areas including: receiving sufficient information, agreeing with nephrologists' medical decisions, learning about transplantation between starting dialysis, being informed about the possibility of receiving a kidney from a family member, and having a physician recommend transplantation. Additionally, black patients were more likely to report having received worse care because of race, sex and/or income.

After controlling for preferences, expectations, perceptions of care, health status (black patients reported better overall health and energy levels), sociodemographic characteristics (black patients had lower SES on several measures and were less likely to be married), facility type (black patients were more likely to use for-profit dialysis facilities), primary cause of ESRD (black patients were less likely to have diabetes as the primary cause), and coexisting illnesses, black patients were less likely to have access to transplantation compared with whites with regard to referral for evaluation and less likely to be placed on a waiting list or receive a transplant within 18 months after the initiation of dialysis. These patterns were similar among the subset of patients who wanted a transplant, as well as among the subset of patients who did not receive a transplant from a living donor and were not placed on a waiting list. Thus, patient preferences only explained a small part of the racial differences in rates of referral and of placement on a waiting list for transplantation.

After adjustment for the variables described above, patients undergoing dialysis at the for-profit facilities did not differ significantly from the patients undergoing diagnosis at not-for-profit facilities with respect to the proportion of patients who had been referred for evaluation at a transplantation center.

The authors concluded that, although few patients reported recent discrimination on the basis of their race, income or sex, blacks may be more likely than whites to encounter problems in communicating with their physicians and may have less trust in the health care system. The authors also suggested that approaches to improving black patients' access should include providing more systematic patient education about transplantation, giving patients greater encouragement to undergo evaluation for transplantation and to consider potential living donors, and monitoring physicians and medical groups with regard to racial differences in referral rates among their own patients.