The transplant community has long known that kidney transplantation, when offered to appropriate candidates with end stage renal disease (ESRD), confers advantages over dialysis in survival (1), quality of life and overall cost (2). Current Centers for Medicare and Medicaid (CMS) guidelines require either the documentation of referral of each patient for transplantation or the reason for nonreferral. Despite this, rates of referral for kidney transplantation remain low and inequitable. Encouraging access to transplantation requires greater understanding and rectification of these disparities.
In this issue, Kucirka et al. (3) exploited 2005 modifications in the CMS form 2728 to assess whether patients beginning dialysis were informed about kidney transplantation as potential therapy and if not, to document why. Over 30% of incident ESRD patients were not informed of transplantation as an option for renal replacement therapy (RRT) within 45 days. The most common reason: Transplant candidacy had not been assessed. In other words, the appropriate discussions had not occurred. Although this might at first seem a case of poor timing, it may rather represent a crucial lost opportunity: lack of initial assessment was associated with an almost 50% lower rate of listing for or receiving a kidney transplant. The implication is that providers who failed to have this conversation with patients at the onset of RRT were unlikely to do so later.
The work by Kurcicka et al. indicates lack of information as a key variable in subgroups of patients previously documented to have impaired access to transplantation. Factors associated with early transplantation, such as private insurance or higher education level, may be surrogates for other variables reflecting health literacy and self-assertion that facilitate navigation of the potentially daunting transplant process. Of additional interest, rates of documented medical comorbidities did not differ substantially between those referred and those not referred, at best indicating a lack of internal consistency.
Even though Kurcicka et al. excluded patients undergoing preemptive transplantation from their analysis, there is likely some impact there as well (4). In a recent survey of ESRD patients by the National Kidney Foundation, learning about transplantation early enough to allow it as the initial modality of RRT was highly associated with seeing a nephrologist before starting dialysis, with as many as, a quarter so educated able to receive a transplant under the most optimal condition (5). A discouraging aspect of the current data is that more than half of those not educated appropriately had been under a nephrologist's care before dialysis was imminent.
With medical providers and all relevant professional organizations in agreement that kidney transplantation should be discussed with all patients approaching ESRD, why are so many not told, especially among disadvantaged subgroups? Some providers perceive conflicting messages. There is a clear mandate to promote kidney transplantation as the modality of choice for ESRD. However, there is also the knowledge that kidney donors are in short supply and arranging for living donors is complex and requires more resources from the patient. Perhaps, it should not be so surprising that such potentially awkward conversations are often avoided.
A 2001 consensus conference (6) on wait-listing defined the issue of transplant education and timely referral; much of the 2007 CMS “final rule” that defined minimally acceptable standards for transplant centers originated in that conference. Indeed, one might hope that data more recent than the time period studied by Kuricka et al. indicates improvement. Rational explanation of avoiding the conversation might include lack of reimbursement for time spent counseling or perhaps and equally plausible, the lack of up-to-date knowledge regarding transplantation among dialysis providers. Could it also be that we, as transplant professionals remain at least partly to blame? The 2007 guidelines define responsibilities of transplant centers to referred and listed patients. However, as repositories of information vitally needed by patients, we may need to take an earlier, more active role in ensuring that information is readily available to nephrologists and dialysis units alike. Clearly, there must be broad dialogue among interested parties, pursued with vigor and empowering both provider and patient to move beyond whatever barriers still limit these vital conversations.