Variation in Incidence of ESKD Among Individuals of Native Hawaiian/Pacific Islander Race Based on Data From the US Renal Data System

Abstract

Race is an imprecise social construct that may create barriers to obtaining high-quality health care for some groups owing to social disadvantages and racism. Racial disparities in health care can be addressed only with reliable data on health care outcomes by race. The Institute of Medicine recommends standardized collection of race and ethnicity, collecting self-reported race using the same categories across data sources and allowing designation of more than 1 race.1IOM (Institute of Medicine)Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement. Institute of Medicine, Washington, DC2009Google Scholar The Office of Management and Budget harmonized race and ethnicity categorization across government entities and forms, including the Centers for Medicare & Medicaid Services’ (CMS) End-Stage Renal Disease Medical Evidence Report (Form CMS-2728) used to collect data on race in the US Renal Data System (USRDS). This categorization distinguishes between Asians and Native Hawaiians and Pacific Islanders (NHPI). The USRDS presented data on the incidence of end-stage kidney disease (ESKD) among NHPI in its 2017 annual data report,2Saran R. Robinson B. Abbott K.C. et al.US Renal Data System 2017 Annual Data Report: epidemiology of kidney disease in the United States.Am J Kidney Dis. 2018; 71: A7Abstract Full Text Full Text PDF Scopus (569) Google Scholar revealing a rate that was higher for NHPI than for any other race group.3Naʻai D. Raphael K.L. CKD in Native Hawaiians and Pacific Islanders: trouble in paradise.Clin J Am Soc Nephrol. 2019; 14: 1661-1663Crossref PubMed Scopus (9) Google Scholar Subsequently, investigators demonstrated that including multiracial NHPI in the US subpopulation at risk lowered apparent ESKD incidence, but disparity remained. Differences in collection and entry of race data in the USRDS and the US Census appear to persist, hindering determination of rates of disease and disparity, particularly for small, heterogeneous populations such as NHPI. US Census data on race are based on self-report, whereas information in Form CMS-2728 is usually provided by physicians or dialysis facility staff using uncertain procedures to collect the information,4Xiang J. Morgenstern H. Li Y. et al.Incidence of ESKD among Native Hawaiians and Pacific Islanders living in the 50 US states and Pacific Island territories.Am J Kidney Dis. 2020; 76: 340-349Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar entered into CMS databases by dialysis provider personnel, and further processed before transmission to the USRDS. To further examine variations in ESKD incidence among NHPI related to inconsistencies between USRDS data and the US Census, we used additional data from Form CMS-2728 that asks for patients’ “Country/Area of Origin or Ancestry.” We determined the proportion of patients of NHPI race initiating dialysis between January 1, 2010 and December 31, 2017 whose country/area of origin was one of the areas of NHPI origin designated by the US Census Bureau.5US Census BureauAmerican Community Survey (ACS). Race. United States Census Bureau. United States Census QuickFacts Web site.https://www.census.gov/quickfacts/fact/note/US/RHI625219Date accessed: August 23, 2021Google Scholar We calculated ESKD incidence when individuals not from designated NHPI areas of origin were included or excluded from the NHPI race group. There were 924,418 patients with incident ESKD in 2010-2017 with available race data; 10,636 (1.2%) were NHPI (Table S1). The most common area of origin collected on Form CMS-2728 was the United States (32.0%; Fig 1). The Philippines, which is not considered an area of origin for NHPI by the US Census Bureau, was the second most frequently listed. Several other countries not considered an area of origin for NHPI were listed less frequently, including Mexico (2.2%) and India (1.6%) (Fig 1). Overall, only 63.1% of patients designated as NHPI in the USRDS met the US Census definition of NHPI based on area of origin. The rate of incident ESKD among all patients designated as NHPI was similar to that of Black individuals until 2012 and then increased to higher rates in recent years (877.9 pmp among NHPI versus 661.6 pmp among Black persons in 2017) (Fig 2). When we excluded NHPI whose area of origin is not a designated NHPI area of origin, rates were considerably lower (483.9 pmp in 2010 and 555.5 pmp in 2017). Our results highlight the importance of self-report of race1IOM (Institute of Medicine)Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement. Institute of Medicine, Washington, DC2009Google Scholar and potential differences between race and area of origin, as fully 37% of the NHPI incident ESKD population in our study did not meet the US Census definition of NHPI area of origin.5US Census BureauAmerican Community Survey (ACS). Race. United States Census Bureau. United States Census QuickFacts Web site.https://www.census.gov/quickfacts/fact/note/US/RHI625219Date accessed: August 23, 2021Google Scholar Inconsistencies in designation of patient race and the previously reported problems caused by single-race designation in the USRDS in a population that is highly multiracial6Centers for Disease Control and PreventionUS Census populations with bridged race categories.https://www.cdc.gov/nchs/nvss/bridged_race.htmDate accessed: August 4, 2020Google Scholar lead to uncertainty about ESKD incidence among NHPI. Uncertainty surrounding ESKD incidence in NHPI is important because of the large range of possible rates. USRDS reported an incidence of 1,500 pmp in 2015.2Saran R. Robinson B. Abbott K.C. et al.US Renal Data System 2017 Annual Data Report: epidemiology of kidney disease in the United States.Am J Kidney Dis. 2018; 71: A7Abstract Full Text Full Text PDF Scopus (569) Google Scholar Consideration of multiracial individuals lowered the incidence to 921 pmp in 2016.4Xiang J. Morgenstern H. Li Y. et al.Incidence of ESKD among Native Hawaiians and Pacific Islanders living in the 50 US states and Pacific Island territories.Am J Kidney Dis. 2020; 76: 340-349Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar Removing NHPI individuals from non-NHPI areas of origin further reduced the rate to 574.6 pmp. Nevertheless, even under the most conservative scenario (in which NHPI not from NHPI areas of origin are removed from the numerator and multiracial NHPI in the US population are included in the denominator), the incidence of ESKD remains higher among NHPI than among White persons. Thus, efforts to develop, implement, and monitor strategies to reduce disparities among NHPI are needed. However, efforts to monitor progress may be hampered by inconsistencies in determination of NHPI race. In addition, changes in race categorization and/or in how people self-report as part of assimilation and avoidance of discrimination over time could affect estimates of ESKD incidence, particularly for small groups, making it difficult to track progress in addressing disparities. A limitation of our study is that we assumed that all NHPI patients from the United States, the most common area of origin among NHPI, met the Census definition of NHPI, which may not be correct. Designation of race in the USRDS is likely more problematic among NHPI than other race groups and deserves special attention. Race and area of origin should be self-reported, and data entry should match patient report, including allowing for multiple races. Identification and monitoring of racial disparities depend on it. Research idea and study design: KLJ, JBW, YP, DTG; data acquisition: YP, JL DTG; data analysis and interpretation: KLJ, JBW, YP, JL, EW, DTG; statistical analysis: YP, JL, DTG. Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual’s own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate. Support for this work was provided by the National Institute of Diabetes and Digestive and Kidney Diseases (contract 75N94019C00006). The funders had no role in study design, data collection, analysis, reporting, or the decision to submit the study for publication. The authors declare that they have no relevant financial interests. The data reported here have been supplied by the USRDS. The interpretation and reporting of these data are the responsibility of the authors and in no way should be seen as an official policy or interpretation of the US Government. Received June 30, 2021. Evaluated by 2 external peer reviewers, with direct editorial input from an Associate Editor and the Editor-in-Chief. Accepted in revised form September 27, 2021. Download .pdf (.19 MB) Help with pdf files Supplementary File (PDF)Item S1; Table S1.