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

Background: In the United States, black patients undergo renal transplantation less often than white patients, but few studies have directly assessed the association between race and patients' preferences with respect to transplantation. Methods: To assess preferences with respect to transplantation and experiences with medical care, we interviewed 1392 (82.9 percent) of 1679 eligible patients with end-stage renal disease (age range, 18 to 54 years) approximately 10 months after they had begun maintenance treatment with dialysis. Participants were selected from a stratified random sample of patients undergoing dialysis in four regions of the United States (Alabama, southern California, 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 women, 337 black men, and 317 white men. Black patients were less likely than white patients to want a transplant (76.3 percent of black women reported such 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 certain about this preference (58.3 percent vs. 65.3 percent and 64.1 percent vs. 75.7 percent, respectively; P<0.01 for each comparison with both sexes combined). However, much larger differences were evident in rates of referral for evaluation at a transplantation center (50.4 percent for black women 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 waiting 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' preferences and expectations about transplantation, sociodemographic characteristics, the type of dialysis facility, perceptions of care, health status, the cause of renal failure, and the presence or absence of coexisting illnesses. Conclusions: In the United States, the preferences and expectations with respect 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 transplantation are fully informed about it and are referred for evaluation. (N Engl J Med 1999;341:1661-9.) (C) 1999, Massachusetts Medical Society.