Tracking new cases of end-stage renal disease (ESRD) is challenging, because only patients who receive treatment for ESRD are reliably identified by the CMS ESRD Medical Evidence Report (form CMS-2728). Because there is no comprehensive registration system, patients with ESRD who choose not to initiate chronic dialysis are uncounted.
In this section we report on new ESRD patients in freestanding dialysis facilities, which provide the vast majority of dialysis treatments in the U.S. This does undercount the total number of new ESRD cases in the U.S., as we are not reporting new patients in hospital-based dialysis facilities (these patients pose an analytic challenge, with respect to the provision of inpatient versus outpatient dialysis, which we will address in the coming year) or new patients who immediately receive a kidney transplant. We begin with a flowchart that identifies this subset of new ESRD cases in 2011, and subsequently illustrate incident rates and counts, overall, by U.S. Census Division and by state. While incident rates have begun to decline, there is considerable geographic variation in the absolute burden of ESRD, with important implications for the capacity to deliver care.
Like the rates of hospitalization and mortality illustrated in subsequent chapters, counts of new ESRD patients vary in a cyclical manner, with the highest counts occurring in the winter and the lowest in the summer. This pattern was reported in Okinawa, Japan, in 1996 (Iseki et al, American Journal of Nephrology) and is clearly present in domestic data as well. As shown in trends by Census Division and state, the slowing of both rates and counts has been far from uniform across the country. Growth in counts continues, for example, in the Middle Atlantic Division, at 3.1 percent per year since 2004. Within the division, however, the corresponding rate of growth was 4.7 percent per year in New York, but only 1.3 percent per year in Pennsylvania.
Nephrologist care prior to dialysis initiation has been tracked for more than a decade through questions in the Medical Evidence Report. Differences by Census Division are quite striking, with 80 percent of new patients in New England receiving pre-ESRD nephrologist care, compared to just 62 percent in the West South Central division. These geographic variations deserve greater attention from the physician community, as dialysis providers do not influence referral to a nephrologist prior to the start of dialysis treatment. The CKD education benefit, which became available to Medicare beneficiaries in January 2010, has been used by fewer than 2 percent of new ESRD patients (2013 USRDS ADR, page 117). This is a major concern, as poor preparation for ESRD has been reported to impact patient survival and access to home dialytic modalities. Interestingly, data from Medicare claims paints a more complex picture of nephrologist care prior to dialysis initiation. Some patients appear to have seen a nephrologist only in the inpatient setting, and even in the outpatient setting, a substantial share of patients have only seen a nephrologist once or twice during the six months before dialysis initiation. These findings suggest that data from the Medical Evidence Report may overstate the progress that has been made.