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1 TTime present and time past Are both perhaps present in time future, And time future contained in time past. THOMAS STEARNS ELIOT, Four Quartets mone INCIDENCE & PrEVALENCE OF ESrD

2 38 ž 21 ATLAS OF ESRD IN THE UNITED STATES The continued growth of the ESRD program in the United States and around the world has raised questions as to the source of the patients and diseases that are driving the growth. After adjusting for age, gender, and race, the odds of developing end-stage renal disease are higher in the Southwest, South Dakota, Ohio, Pennsylvania, New Jersey, and West Virginia compared to the central western and New England states. The changing demographics of the population may help explain these differences. The odds of developing ESRD, for instance, may be significantly influenced by the prevalence of obesity and of diabetes in the Hispanic and non-hispanic groups (Visscher 21). Hispanics have among the highest rates of ESRD secondary to diabetes and would contribute a greater number of ESRD patients in those areas of the country with higher Hispanic populations. The geographic variation in ESRD may also be influenced by pre-esrd care. Diabetes treatment guidelines from the American Diabetes Association include regular monitoring of glycemic control and lipid levels (ADA 2). Blood pressure control, along with the use of angiotensin converting enzyme inhibitors and angiotensin-2 receptor antagonists, have also been shown to reduce the rate of loss of renal function (Hollenberg 1993). Data on diabetic preventive health care measures (Chapter Ten) show that there is significant under-utilization of these treatment tools, and variations in their use could contribute to the rising rates of ESRD and to the geographic variability. Since the adjusted rates of kidney failure do not address the degree of diabetes care, these factors are only suggested explanations for the different rates of ESRD within the races and ethnic populations. Growth in the ESRD population is fueled not only by populations with high rates of diabetes, but also by RAte per million population 4 WHites 2 1,6 1,4 1,2 1, BlAcks to < to < to <.97 below.86 Figure 1.1 Odds ratio of developing kidney failure incident ESRD patients,, by state, adjusted for age, gender, & race The odds of developing renal failure are greatest in the southwest, South Dakota, and the industrial northeast. Factors such as Hispanic ethnicity and renal diagnosis are not considered in these data Figures 1.2 & 1.3 Incident rates of ESRD due to diabetes, by age: whites & blacks per million population Incident rates of ESRD due to diabetes continue to rise in older patients and are noticeably higher in the black population.

3 CHAPTER 1 ž INCIDENCE & PREVALENCE ž 39 DM BlAck 5 HTN BlAck RAte per million population DM WHite HTN WHite 1997 Figure 1.4 Incident rates of ESRD due to diabetes & hypertension, by race per million population, adjusted for age & gender Diabetes has been the leading cause of renal failure for blacks since 1995, and rates for these patients are four times higher than for white patients with diabetes. shifts in a group's disease burden. During the 199s, for example, diabetes replaced hypertension as the main cause of ESRD in black patients (fig 1.4). Since the analysis is adjusted for age, this shift has not been caused by the aging of the black patient population. More likely explanations include the increasing influence of both diabetes and obesity. Included in this chapter Rates of ESRD due to diabetes in the Hispanic population are almost four times greater in regions with the highest rates than in those with the lowest (fig 1.8). The contribution of Hispanics to the population of ESRD patients varies from.4% in Network 8 to 36% in Network 14; for black patients, the range is from 6.5% in Network 16 to 57% in Network 6 (table 1.6). The age distribution of incident and prevalent ESRD patients is significantly different between dialysis and transplant patients (fig 1.6). The dialysis population is skewed to patients 65 and older, while the transplant population is more normally distributed around the age group. The prevalent burden of ESRD time under treatment also shows considerable geographic variation when broken down by patient vintage (fig 1.21). The number of prevalent transplant patients per million population is highest in the Upper Midwest across all vintages, a pattern which in part reflects racial differences in transplantation rates and in survival rates on dialysis (see Tables of incident and prevalent counts by modality, as well as tables of patient demographics overall and by Chapter Seven). renal network A graph of incident and prevalent counts by age group, and a graph of median age at initiation, by race A map of overall incident rates, along with maps by primary diagnosis and race Graphs showing incident rates by age, gender, race, ethnicity, and primary diagnosis Maps of prevalent rates by modality, age group, and race Graphs and maps showing patient distribution by prior ESRD time

4 4 ž 21 ATLAS OF ESRD IN THE UNITED STATES Table 1.1 Incident counts & rates: hemodialysis (as first modality), rates adjusted for age, gender, & race Rates per million do not include patients whose initial modality is unknown. All category includes other, unknown, and missing diagnoses. Incident rates in 1995 increased more than they did in the previous five-year period for patients older than 65, and rates are also rising for male patients. The rate of rise of diabetes as a primary diagnosis has remained unchanged, while it has increased for hypertension. Percent Rate Average annual % Average annual % Number of total per million change, change, , , , , , , Male 38, Female 33, White 45, Black 22, Native American Asian 2, Hispanic 7, Non-Hispanic 64, Diabetes 32, Hypertension 19, Glomerulonephritis 6, Cystic kidney 1, Other urologic 1, All 71, Table 1.2 Incident counts & rates: peritoneal dialysis (as first modality), rates adjusted for age, gender, & race Rates per million do not include patients whose initial modality is unknown. All category includes other, unknown, and missing diagnoses. Rates per million of incident peritoneal dialysis patients decreased from 1995 to. Percent Rate Average annual % Average annual % Number of total per million change, change, , , , Male 3, Female 3, White 5, Black 1, Native American Asian Hispanic Non-Hispanic 6, Diabetes 2, Hypertension 1, Glomerulonephritis Cystic kidney Other urologic All 6, Table 1.3 Incident counts & rates: transplant (as first modality), rates adjusted for age, gender, & race Rates per million do not include patients whose initial modality is unknown. All category includes other, unknown, and missing diagnoses. Pre-emptive transplant rates increased from 1995 to. Percent Rate Average annual % Average annual % Number of total per million change, change, Male 1, Female White 1, Black Native American Asian Hispanic Non-Hispanic 1, Diabetes Hypertension Glomerulonephritis Cystic kidney Other urologic All 2,

5 CHAPTER 1 ž INCIDENCE & PREVALENCE ž (328) 286 to <3 27 to < to <27 below 251 (235) Figure 1.5 Incident rates per million population, ESRD patients,, by HSA, smoothed & adjusted for age, gender, & race Incident rates reported here on an HSA level are lower than those reported elsewhere in the 21 Annual Data Report because of the omission of patients for whom no county code is reported. Incident rates are highest in the southwest, Louisiana, and parts of Pennsylvania, West Virginia, and Ohio. There is a 39.6 % difference in rates between the highest and lowest quintiles. These rates are not adjusted for primary diagnosis or ethnicity, which may be important contributing factors Dialysis Transplant Incident Prevalent 5, 1, 15, 2, 25, 3, 1, 3, 5, 7, 9, 11, 13, Number of patients Figure 1.6 Incident & prevalent counts, by age & modality While the transplant population is distributed normally across age groups, the dialysis population is skewed toward older ESRD patients. White Black Native American Asian Dialysis Transplant Figure 1.7 Median age at incidence, by race The median age for white patients with pre-emptive transplants is up to 43, while for white patients on dialysis it has increased to 67. In both modalities the median age for blacks remains unchanged, and has increased for patients of Asian heritage Median age

6 A T L A S O F E S R D I N Diabetes, all T H E U N I T E D S TAT E S Diabetes, white (137.5) 95.9 to < to < to <88.5 below 79.6 (71.2) (165.4) 126. to < to < to <118.8 below 18.3 (98.1) Hypertension, all Hypertension, white (91.9) 74.2 to < to < to <68.6 below 61.9 (54.9) Glomerulonephritis, all 6.9+ (69.2) 56. to < to < to <51.3 below 43.2 (39.3) Glomerulonephritis, white (27.7) 25.5 to < to < to <24.7 below 23.8 (22.5) (22.3) 2.7 to < to < to <2. below 19.2 (18.1) Figure 1.8 Incident rates, by primary diagnosis & race/ethnicity per million population,, by HSA; data for all are smoothed & adjusted for age, gender & race, data for whites are smoothed & adjusted for age & gender, & data for black & Hispanic patients are smoothed only Incident rates of diabetes are highest in the southwest, Louisiana, Pennsylvania, West Virginia, Ohio, and portions of California for the general ESRD population and for white patients, in the eastern half of the country for black patients (in some areas more than 8% higher than in the western portion of the country), and in the southwestern and midwestern states for Hispanic patients. Rates of hypertension show similar patterns for whites and blacks, while rates for Hispanics are highest across the southern portion of the country. High rates of glomerulonephritis occur in pockets throughout the country for white patients, on portions of the East and West Coasts and in the Midwest for blacks, and in Maine, Florida, and the central states for Hispanics.

7 C H A P T E R 1 Diabetes, black I N C I D E N C E & P R E V A L E N C E Diabetes, Hispanic 315+ (354) 278 to < to < to <253 below 218 (194) Hypertension, black 132+ (184) 96 to < to <96 63 to <79 below 63 (49) Hypertension, Hispanic 26+ (35) 25 to <26 24 to <25 22 to <24 below 22 (19) insuff. data 221+ (265) 185 to < to < to <157 below 132 (113) insuff. data Glomerulonephritis, black Figure 1.8 (continued) Incident rates, by primary diagnosis & race/ethnicity Glomerulonephritis, Hispanic 53+ (64) 5 to <53 47 to <5 42 to <47 below 42 (36) insuff. data per million population,, by HSA; data for all are smoothed & adjusted for age, gender & race, data for whites are smoothed & adjusted for age & gender, & data for black & Hispanic patients are smoothed only (18.9) 13.6 to < to < to <12.1 below 11.2 (9.9) insuff. data 43

8 44 ž 21 ATLAS OF ESRD IN THE UNITED STATES Figure 1.9 Incident rates, by age & first modality adjusted for gender & race The greatest increase in incident dialysis rates continues to be in the 65+ age group, while rates of increase are slowing for dialysis patients across all other age groups. Rate per million population 1,4 1,2 1, Dialysis Transplant Figure 1.1 Incident rates, by gender & first modality adjusted for age & race Incident rates for male dialysis patients are 43% higher in than for females, and these rates are increasing more quickly for men than for women. Rate per million population Dialysis Male Female Transplant Figure 1.11 Incident rates, by race/ ethnicity & first modality adjusted for age & gender While incident rates are beginning to stabilize for black dialysis patients, they still remained 311% higher in than for white patients. The increase in rates for Hispanic dialysis patients since 1995 can be explained in part by the introduction of the revised Medical Evidence Form (2728), which contains more specific questions on race and ethnicity. Some transplant rates are unstable because of small patient populations. Rate per million population 1, Dialysis Transplant White Black Native American Asian Hispanic

9 CHAPTER 1 ž INCIDENCE & PREVALENCE ž 45 Rate per million population Dialysis Hispanic Non-Hispanic Transplant Figure 1.12 Incident rates, by ethnicity & first modality adjusted for age & gender Data prior to 1995 is suspect due to the under-reporting of Hispanics on the Medical Evidence Form (2728) Rate per million population Dialysis Diabetes Hypertension Glomerulonephritis Cystic kidney Transplant Figure 1.13 Incident rates, by primary diagnosis & first modality adjusted for age, gender, & race In dialysis patients the incidence of diabetes as a primary diagnosis continues to rise, but at a slower rate than it did in the mid-199s. Rates of hypertension continue to increase as well, while rates of glomerulonephritis and cystic kidney disease have remained relatively constant. Rates of diabetes in pre-emptive transplant patients rose between 1998 and Rate per million population White Diabetes Hypertension Glomerulonephritis Cystic kidney Black Native American Asian Figure 1.14 Incident rates, by primary diagnosis & race dialysis patients, adjusted for age & gender Following the general trends in dialysis patients as a whole, rates of diabetes have increased across all races, and the disease continues to be the primary cause of ESRD in all racial groups. Diabetes has, since 1995, overtaken hypertension as the leading cause of renal failure in the black population

10 46 ž 21 ATLAS OF ESRD IN THE UNITED STATES Table 1.4 Patient demographics, by primary disease & first modality: column percent incident patients, 1995 combined Patients with race designated as other or unknown are included in the total counts. Among incident patients on dialysis, diabetes is the primary cause of renal failure for 43% of whites, 42% of blacks, 68% of Native Americans, 46% of Asians, and 6% of Hispanics. Total % of Median % % % % % % % % N % % % DIALYSIS pts. total age < >64 Male Female White Black Am Asian Hisp. All ESRD (reference) 392, Diabetes 168, Glomerulonephritis 38, Secondary GN/vasculitis 9, Interstitial neph./pyeloneph. 15, HTN/large vessel disease 13, Cystic/hereditary/congen. 12, Neoplasms/tumors 7, Miscellaneous conditions 14, Etiology uncertain 15, Missing 7, TRANSPLANT All ESRD (reference) 8, Diabetes 1, Glomerulonephritis 1, Secondary GN/vasculitis Interstitial neph./pyeloneph HTN/large vessel disease Cystic/hereditary/congen. 1, Neoplasms/tumors Miscellaneous conditions Etiology uncertain Missing 3, Table 1.5 Patient demographics, by primary disease & first modality: row percent incident patients, 1995 combined Patients with race designated as other or unknown are included in the total counts. Total % of Median % % % % % % % % N % % % DIALYSIS pts. total age < >64 Male Female White Black Am Asian Hisp. All ESRD (reference) 392, Diabetes 168, Glomerulonephritis 38, Secondary GN/vasculitis 9, Interstitial neph./pyeloneph. 15, HTN/large vessel disease 13, Cystic/hereditary/congen. 12, Neoplasms/tumors 7, Miscellaneous conditions 14, Etiology uncertain 15, Missing 7, TRANSPLANT All ESRD (reference) 8, Diabetes 1, Glomerulonephritis 1, Secondary GN/vasculitis Interstitial neph./pyeloneph HTN/large vessel disease Cystic/hereditary/congen. 1, Neoplasms/tumors Miscellaneous conditions Etiology uncertain Missing 3,

11 CHAPTER 1 ž INCIDENCE & PREVALENCE ž 47 Total % of Rate per Mean % % % % Native % Network patients total million age Diabetes White Black American Asian Hispa 1 3, , , , , , , , , , , , , , , , , , All 85, Table 1.6 Demographics by ESRD network: incident dialysis patients Patients with race designated as other or unknown are included in the total counts. Dialysis includes hemodialysis, peritoneal dialysis, and dialysis categorized as unknown type. Networks are defined in Appendix B. Hispanic patients account for over 11% of the patient population in Networks 2 and 7, 17.5% in Network 17, 23% in Network 15, and 34 36% in Networks 14 and 18. Total % of Rate per Mean % % % % Native % Network patients total million age Diabetes White Black American Asian Hispa 1 9, , , , , , , , , , , , , , , , , , , All 239, Table 1.7 Demographics by ESRD network: point prevalent dialysis patients December 31, Patients with race designated as other or unknown are included in the total counts. Dialysis includes hemodialysis, peritoneal dialysis, and dialysis categorized as unknown type. Networks are defined in Appendix B. Patterns of prevalent patients across the ESRD networks follow those seen for incident patients. Total % of Rate per Mean % % % % Native % Network patients total million age Diabetes White Black American Asian Hispa 1 4, , , , , , , , , , , , , , , , , , All 99, Table 1.8 Demographics by ESRD network: point prevalent transplant patients December 31, Patients with race designated as other or unknown are included in the total counts. Networks are defined in Appendix B. The proportion of Hispanic patients is highest in Networks 17, 14, and 18.

12 48 ž 21 ATLAS OF ESRD IN THE UNITED STATES Table 1.9 Point prevalent counts & rates: hemodialysis patients alive on December 31,, rates adjusted for age, gender, & race Patients with race designated as other or unknown are included in the total counts. All category includes other, unknown, and missing diagnoses. Hispanic data prior to 1995 is suspect due to under-reporting on the Medical Evidence Form (2728). The average annual change in the rate per million for point prevalent hemodialysis patients was 4.2% from 1995 to, down from 7.2% in the previous five-year period. Percent Rate Average annual % Average annual % Number of total per million change, change, , , , , , , , Male 11, Female 99, White 113, Black 84, , Native American 3, , Asian 7, Hispanic 2, , Non-Hispanic 189, Diabetes 84, Hypertension 59, Glomerulonephritis 24, Cystic kidney 5, Other urologic 4, All 29, Table 1.1 Point prevalent counts & rates: peritoneal dialysis patients alive on December 31,, rates adjusted for age, gender, & race Patients with race designated as other or unknown are included in the total counts. All category includes other, unknown, and missing diagnoses. Hispanic data prior to 1995 is suspect due to under-reporting on the Medical Evidence Form (2728). While rates per million for point prevalent peritoneal dialysis patients increased by an average of 6.9% annually in the first half of the 199s, they decreased an average of 7.3% each year in the last half of the decade. Percent Rate Average annual % Average annual % Number of total per million change, change, , , , , Male 11, Female 1, White 14, Black 5, Native American Asian Hispanic 1, Non-Hispanic 19, Diabetes 7, Hypertension 4, Glomerulonephritis 4, Cystic kidney Other urologic All 21, Table 1.11 Point prevalent counts & rates: transplant patients alive on December 31,, rates adjusted for age, gender, & race Patients with race designated as other or unknown are included in the total counts. All category includes other, unknown, and missing diagnoses. Hispanic data prior to 1995 is suspect due to under-reporting on the Medical Evidence Form (2728). The annual average rate of growth in the point prevalent transplant population decreased slightly in the second half of the 199s, from 6.7% between 1991 and 1995 to 5.3% between 1995 and. Percent Rate Average annual % Average annual % Number of total per million change, change, , , , , , Male 57, Female 39, White 73, Black 18, Native American 1, Asian 3, Hispanic 8, Non-Hispanic 88, Diabetes 19, Hypertension 12, Glomerulonephritis 23, Cystic kidney 7, Other urologic 2, All 97,

13 C H A P T E R 1 Dialysis I N C I D E N C E & P R E V A L E N C E 49 Transplant 367+ (427) 336 to < to < to <315 below 295 (275) 88+ (1,5) 83 to <88 8 to <83 74 to <8 below 74 (683) Ages 2 44 Ages ,89+ (4,321) 3,73 to <3,89 3,6 to <3,73 3,43 to <3,6 below 3,43 (3,23) 799+ (83) 773 to < to < to <754 below 79 (653) Ages Ages 75+ 2,21+ (2,461) 2,15 to <2,21 2,8 to <2,15 1,97 to <2,8 below 1,97 (1,824) Figures 1.15 & 1.16 Prevalent rates for dialysis & transplant, & ESRD prevalent rates by age per million population,, by HSA; data for figure 1.15 are smoothed & adjusted for age, gender, & race; data for figure 1.16 are smoothed & adjusted for gender & race Though the geographic patterns are almost reversed between the two modalities, prevalent rates of both dialysis and transplant patients show marked differences between the lowest and highest quintiles, 47% and 55% respectively. In terms of age, prevalent rates for the youngest adult patients are highest in the northern part of the country and in areas of Texas and Maine; the highest rates of patients aged occur in Texas, New Mexico, and the Dakotas; and rates for patients older than 65 are greatest in portions of Texas, New Mexico, and the north central and northeastern portions of the country. 3,4+ (3,255) 2,85 to <3,4 2,72 to <2,85 2,59 to <2,72 below 2,59 (2,425)

14 5 2 1 A T L A S O F E S R D I N T H E All U N I T E D S TAT E S Native American 2,28+ (2,57) 2,17 to <2,28 2,7 to <2,17 1,91 to <2,7 below 1,91 (1,658) 1,25+ (1,481) 1,8 to <1,25 1,3 to <1,8 96 to <1,3 below 96 (856) White Asian 98+ (1,16) 9 to <98 84 to <9 76 to <84 below 76 (681) 9+ (968) 86 to <9 84 to <86 8 to <84 below 8 (748) Black Hispanic 3,25+ (3,594) 2,95 to <3,25 2,6 to <2,95 2,21 to <2,6 below 2,21 (1,897) Figure 1.17 Prevalent rates, by race/ethnicity per million population, point prevalent ESRD patients alive on December 31,, by HSA, smoothed The mean prevalent rate for Native Americans with ESRD differs by 51% when comparing the lower to the upper quintile. Clustering of these patients occurs in the southeast, mid-southwest, and north-central areas of the United States. The mean prevalent rate for black patients in the highest quintile is almost double that in the lowest, and for Hispanics is triple that of the lowest quintile. 98+ (1,376) 79 to <98 67 to <79 53 to <67 below 53 (449)

15 CHAPTER 1 ž INCIDENCE & PREVALENCE ž 51 Percent of patients Figure 1.18 Prior ESRD time: December 31 st point prevalent patients The distribution of all patients by vintage has changed most dramatically in those with ten or more of ESRD treatment. 5 to <6 months 6 to <12 months 1 to <2 2 to <4 4 to <6 6 to <1 1+ Percent of patients Figure 1.19 Prior ESRD time: December 31 st point prevalent dialysis patients The distribution of dialysis patients by vintage has remained relatively steady since 199, with slight increases in the percent of patients who have had ESRD for 1 2 or to <6 months 6 to <12 months 1 to <2 2 to <4 4 to <6 6 to <1 1+ Percent of patients Figure 1.2 Prior ESRD time: December 31 st point prevalent transplant patients The number of transplant patients who have had ESRD for ten or more increased 78.6% between 199 and. This sharp increase was accompanied by a parallel decrease in the percent of patients with vintages of 1 2 and to <6 months 6 to <12 months 1 to <2 2 to <4 4 to <6 6 to <1 1+

16 A T LA S O F E S R D I N T H E U N I T E D S TAT E S Transplant, <1 year Dialysis, <1 year 7.6+ (9.8) 6.4 to < to < to <5.6 below 4.9 (4.4) 282+ (348) 235 to < to < to <21 below 173 (147) Dialysis, 1 <5 Transplant, 1 <5 47+ (636) 37 to <47 32 to <37 27 to <32 below 27 (228) Dialysis, (119) 96 to <16 89 to <96 81 to <89 below 81 (75) Transplant, (326) 149 to < to <149 1 to <12 below 1 (85) Figure 1.21 Prior ESRD time, by modality per million population, prevalent dialysis & transplant patients,, by HSA, smoothed Across patient vintages, the mean point prevalent rate for dialysis patients in the highest quintile is between 1.5 and 4 times that of the lowest; the highest rates occur in the southeastern portion of the country. For transplant patients, whose rates are consistently higher in the northern part of the country, mean values in the highest and lowest quintiles differ by 123% in the number of patients who have had ESRD for less than one year, and by 55 59% in other patients (286) 226 to < to < to <212 below 199 (185)

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