The effect of patients' preferences on racial differences in access to renal transplantation

Background: In the United States, black patients undergo renal transplantat ion less often than white patients, but few studies have directly assessed the association between race and patients' preferences with respect to tran splantation. Methods: To assess preferences with respect to transplantation and experien ces with medical care, we interviewed 1392 (82.9 percent) of 1679 eligible patients with end-stage renal disease (age range, 18 to 54 years) approxima tely 10 months after they had begun maintenance treatment with dialysis. Pa rticipants were selected from a stratified random sample of patients underg oing dialysis in four regions of the United States (Alabama, southern Calif ornia, Michigan, and the mid-Atlantic region of Maryland, Virginia, and the District of Columbia) in 1996 and 1997. Patients were followed until March 1999. Results: The interviews were conducted with 384 black women, 354 white wome n, 337 black men, and 317 white men. Black patients were less likely than w hite patients to want a transplant (76.3 percent of black women reported su ch a preference, vs. 79.3 percent of white women, and 80.7 percent of black men vs. 85.5 percent of white men), and they were less likely to be very c ertain about this preference (58.3 percent vs. 65.3 percent and 64.1 percen t vs. 75.7 percent, respectively; P<0.01 for each comparison with both sexe s combined). However, much larger differences were evident in rates of refe rral for evaluation at a transplantation center (50.4 percent for black wom en vs. 70.5 percent for white women, and 53.9 percent for black men vs. 76. 2 percent for white men; P<0.001 for each comparison) and placement on a wa iting list or transplantation within 18 months after the start of dialysis therapy (31.3 percent for black women vs. 56.5 percent for white women, and 35.3 percent for black men vs. 60.6 percent for white men; P<0.001). These racial differences remained significant after adjustment for patients' pre ferences and expectations about transplantation, sociodemographic character istics, the type of dialysis facility, perceptions of care, health status, the cause of renal failure, and the presence or absence of coexisting illne sses. Conclusions: In the United States, the preferences and expectations with re spect to renal transplantation among patients with end-stage renal disease differ according to race. These differences, however, explain only a small fraction of the substantial racial differences in access to transplantation . Physicians should ensure that black patients who desire renal transplanta tion are fully informed about it and are referred for evaluation. (N Engl J Med 1999;341:1661-9.) (C) 1999, Massachusetts Medical Society.