Abstract
Background: Patients who receive kidney transplants before beginning dialysis (known as preemptive transplantation) have lower rates of morbidity and mortality and a longer work life than do those who receive them after beginning dialysis. But in the United States fewer than 2.5% of patients with end-stage kidney disease undergo transplantation as their initial therapy.
Objective: To understand barriers to early transplantation, the National Kidney Foundation (NKF) surveyed patients randomly selected from its database.
Methods: A 28-question survey on socioeconomic factors; perceptions, fears, and concerns about living-donor transplantation; and education regarding transplantation as a treatment option was distributed to a total of 3,586 people randomly chosen from the NKF's database. The database is not limited to kidney patients, and 19.3% of the responses were disqualified because the respondents didn't have chronic kidney disease (CKD) or hadn't undergone kidney transplantation. The 417 responses acceptable for analysis represented at least 12% of qualified survey recipients. Of these, 316 (76%) were kidney transplant recipients from either living or deceased donors and 101 (24%) were patients with CKD who had never undergone transplantation. The surveys sent to the latter group contained slight modifications from those sent to the transplant recipients. We compared responses from people who had undergone kidney transplantation with responses from those who hadn't undergone the procedure.
Results: Renal transplant recipients had higher incomes and more education, were more often white, and were more likely to have learned about treatment options from a physician than were those who hadn't undergone transplantation. Half of the respondents who hadn't undergone the procedure believed that dialysis must precede transplantation, and 60% viewed transplantation as a last resort. Out-of-pocket expenses were greater for transplant recipients, even though worries about future medical costs were common in both groups. Most respondents were willing to accept a kidney from a living donor, although they were uncomfortable with asking someone to donate.
Conclusions: Substantial barriers to preemptive kidney transplantation remain for patients with CKD; a lack of financial resources and educational deficits were the most common barriers found in the survey.