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Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies

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Abstract

Population-based cancer registry data from the Surveillance, Epidemiology, and End Results (SEER) Program at the National Cancer Institute are based on medical records and administrative information. Although SEER data have been used extensively in health disparities research, the quality of information concerning race, Hispanic ethnicity, and immigrant status has not been systematically evaluated. The quality of this information was determined by comparing SEER data with self-reported data among 13,538 cancer patients diagnosed between 1973–2001 in the SEER—National Longitudinal Mortality Study linked database. The overall agreement was excellent on race (κ = 0.90, 95% CI = 0.88–0.91), moderate to substantial on Hispanic ethnicity (κ = 0.61, 95% CI = 0.58–0.64), and low on immigrant status (κ = 0.21. 95% CI = 0.10, 0.23). The effect of these disagreements was that SEER data tended to under-classify patient numbers when compared to self-identifications, except for the non-Hispanic group which was slightly over-classified. These disagreements translated into varying racial-, ethnic-, and immigrant status-specific cancer statistics, depending on whether self-reported or SEER data were used. In particular, the 5-year Kaplan–Meier survival and the median survival time from all causes for American Indians/Alaska Natives were substantially higher when based on self-classification (59% and 140 months, respectively) than when based on SEER classification (44% and 53 months, respectively), although the number of patients is small. These results can serve as a useful guide to researchers contemplating the use of population-based registry data to ascertain disparities in cancer burden. In particular, the study results caution against evaluating health disparities by using birthplace as a measure of immigrant status and race information for American Indians/Alaska Natives.

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References

  1. Clegg LX, Li FP, Hankey BF, Chu K, Edwards BK (2002) Cancer survival among US whites and minorities: a SEER (Surveillance, Epidemiology, and End Results) program population-based study. Arch Intern Med 162:1985–1993

    Article  PubMed  Google Scholar 

  2. Harlan LC, Clegg LX, Trimble EL (2003) Trends in surgery and chemotherapy for women diagnosed with ovarian cancer in the United States. J Clin Oncol 21:3488–3494

    Article  PubMed  Google Scholar 

  3. Hedeen AN, White E (2001) Breast cancer size and stage in Hispanic American women, by birthplace: 1992–1995. Am J Public Health 91:122–125

    PubMed  CAS  Google Scholar 

  4. Hedeen AN, White E, Taylor V (1999) Ethnicity and birthplace in relation to tumor size and stage in Asian American women with breast cancer. Am J Public Health 89:1248–1252

    PubMed  CAS  Google Scholar 

  5. Jemal A, Clegg LX, Ward E et al (2004) Annual report to the nation on the status of cancer, 1975–2001, with a special feature regarding survival. Cancer 101:3–27

    Article  PubMed  Google Scholar 

  6. Miller BA, Kolonel LN, Bernstein L et al (1996) Racial/ethnic cancer patterns in the United States 1988–1992. Bethesda, MD, National Cancer Institute, NIH Publ. No. 96–4104

    Google Scholar 

  7. Ries LAG, Eisner MP, Kosary CL et al (2005) SEER Cancer Statistics Review, 1975–2002: National Cancer Institute. Bethesda, MD, http://www.seer.cancer.gov/csr/1975_2002/

  8. Haynes MA, Smedley BD (1999) The unequal burden of cancer: an assessment of NIH research and programs for ethnic minorities and the medically underserved. National Academy Press, Washington, DC

    Google Scholar 

  9. Thomson GE, Mitchell F, Williams M (2006) Examining the health disparities research plan of the National Institutes of Health: Unfinished business. National Academy of Sciences, Washington, DC

    Google Scholar 

  10. U.S. Cancer Statistics Working Group (2005) United States Cancer Statistics: 1999–2002 Incidence and Mortality Atlanta: Department of Health and Human Services, Centers for Disease Control and Prevention, and National Cancer Institute. Available at: www.cdc.gov/cancer/npcr/uscs

  11. Stewart SL, Swallen KC, Glaser SL, Horn-Ross PL, West DW (1999) Comparison of methods for classifying Hispanic ethnicity in a population-based cancer registry. Am J Epidemiol 149:1063–1071

    PubMed  CAS  Google Scholar 

  12. Swallen KC, Glaser SL, Stewart SL, West DW, Jenkins CN, McPhee SJ (1998) Accuracy of racial classification of Vietnamese patients in a population-based cancer registry. Ethn Dis 8:218–227

    PubMed  CAS  Google Scholar 

  13. Swallen KC, West DW, Stewart SL, Glaser SL, Horn-Ross PL (1997) Predictors of misclassification of Hispanic ethnicity in a population-based cancer registry. Ann Epidemiol 7:200–206

    Article  PubMed  CAS  Google Scholar 

  14. Gomez SL, Glaser SL. Misclassification of race/ethnicity in a population-based cancer registry. Cancer Cause and Control (in press)

  15. Gomez SL, Glaser SL (2004) Quality of birthplace information obtained from death certificates for Hispanics, Asians, and Pacific Islanders. Ethn Dis 14:292–295

    PubMed  Google Scholar 

  16. Gomez SL, Glaser SL, Kelsey JL, Lee MM (2004) Bias in completeness of birthplace data for Asian groups in a population-based cancer registry (United States). Cancer Causes Control 15:243–253

    Article  PubMed  Google Scholar 

  17. The Surveillance, Epidemiology, and End Results Program. About SEER (2006) Available at: http://www.seer.cancer.gov/about/. Accessed on: March 22

  18. Hankey BF, Ries LA, Edwards BK (1999) The surveillance, epidemiology, and end results program: a national resource. Cancer Epidemiol Biomarkers Prev 8:1117–1121

    PubMed  CAS  Google Scholar 

  19. U.S. Census Bureau (2006) Current Population Survey. Technical Paper 63RV: Design and Methodology. Available at: http://www.census.gov/prod/2002pubs/tp63rv.pdf. Accessed on: March 22

  20. U.S. Census Bureau (2006) Current Population Survey. Source and Accuracy of the Data for the March 200 Current Population Survey Microdata File. Available at: http://www.bls.census.gov/cps/ads/2002/S&A_02.pdf. Accessed on: March 22

  21. National Longitudinal Mortality Study (NLMS) (2006) Project Description. Available at: http://www.census.gov/nlms/projectDescription.html. Accessed on: March 22

  22. U.S. Census Bureau (2006) Confidentiality. Available at: http://www.census.gov/main/www/policies.html#confidential. Accessed on: March 22

  23. Rogot E, Sorlie P, Johnson NJ (1986) Probabilistic methods in matching census samples to the National Death Index. J Chronic Dis 39:719–734

    Article  PubMed  CAS  Google Scholar 

  24. Calle EE, Terrell DD (1993) Utility of the National Death Index for ascertainment of mortality among cancer prevention study II participants. Am J Epidemiol 137:235–241

    PubMed  CAS  Google Scholar 

  25. Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174

    Article  PubMed  CAS  Google Scholar 

  26. Kaplan EL, Meier P (1958) Non parametric estimation from incomplete observations. J Am Stat Assoc 53:457–481

    Article  Google Scholar 

  27. Kelly JJ, Chu SY, Diaz T, Leary LS, Buehler JW (1996) Race/ethnicity misclassification of persons reported with AIDS. The AIDS Mortality Project Group and The Supplement to HIV/AIDS Surveillance Project Group. Ethn Health 1:87–94

    PubMed  CAS  Google Scholar 

  28. Kressin NR, Chang BH, Hendricks A, Kazis LE (2003) Agreement between administrative data and patients’ self-reports of race/ethnicity. Am J Public Health 93:1734–1739

    PubMed  Google Scholar 

  29. Gomez SL, Le GM, West DW, Satariano WA, O’Connor L (2003) Hospital policy and practice regarding the collection of data on race, ethnicity, and birthplace. Am J Public Health 93:1685–1688

    PubMed  Google Scholar 

  30. Polednak AP (2001) Agreement in race-ethnicity coding between a hospital discharge database and another database. Ethn Dis 11:24–29

    PubMed  CAS  Google Scholar 

  31. Blustein J (1994) The reliability of racial classifications in hospital discharge abstract data. Am J Public Health 84:1018–1021

    PubMed  CAS  Google Scholar 

  32. Boehmer U, Kressin NR, Berlowitz DR, Christiansen CL, Kazis LE, Jones JA (2002) Self-reported vs administrative race/ethnicity data and study results. Am J Public Health 92:1471–1472

    PubMed  Google Scholar 

  33. Gomez SL, Kelsey JL, Glaser SL, Lee MM, Sidney S (2005) Inconsistencies between self-reported ethnicity and ethnicity recorded in a health maintenance organization. Ann Epidemiol 15:71–79

    Article  PubMed  Google Scholar 

  34. Polednak AP (2005) Collecting information on race, Hispanic ethnicity, and birthplace of cancer patients: policies and practices in Connecticut hospitals. Ethn Dis 15:90–96

    PubMed  Google Scholar 

  35. Frost F, Taylor V, Fries E (1992) Racial misclassification of Native Americans in a Surveillance, Epidemiology, and End Results cancer registry. J Natl Cancer Inst 84:957–962

    Article  PubMed  CAS  Google Scholar 

  36. Hahn RA, Wetterhall SF, Gay GA et al (2002) The recording of demographic information on death certificates: a national survey of funeral directors. Public Health Rep 117:37–43

    PubMed  Google Scholar 

  37. Lin SS, Clarke CA, O’Malley CD, Le GM (2002) Studying cancer incidence and outcomes in immigrants: methodological concerns. Am J Public Health 92:1757–1759

    PubMed  Google Scholar 

  38. Hahn RA, Stroup DF (1994) Race and ethnicity in public health surveillance: criteria for the scientific use of social categories. Public Health Rep 109:7–15

    PubMed  CAS  Google Scholar 

  39. Hahn RA, Truman BI, Barker ND (1996) Identifying ancestry: The reliability of ancestral identification in the United States by self, proxy, interviewer, and funeral director. Epidemiology 7:75–80

    Article  PubMed  CAS  Google Scholar 

  40. Kaplan JB, Bennett T (2003) Use of race and ethnicity in biomedical publication. Jama 289:2709–2716

    Article  PubMed  Google Scholar 

  41. Sugarman JR, Holliday M, Ross A, Castorina J, Hui Y (1996) Improving American Indian Cancer Data in the Washington State Cancer Registry using linkages with the Indian Health Service and Tribal Records. Cancer 78:1564–1568

    PubMed  CAS  Google Scholar 

  42. Becker TM, Bettles J, Lapidus J et al (2002) Improving cancer incidence estimates for American Indians and Alaska Natives in the Pacific Northwest. Am J Public Health 92:1469–1471

    PubMed  Google Scholar 

  43. Partin MR, Rith-Najarian SJ, Slater JS, Korn JE, Cobb N, Soler JT (1999) Improving cancer incidence estimates for American Indians in Minnesota. Am J Public Health 89:1673–1677

    Article  PubMed  CAS  Google Scholar 

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Acknowledgment

The authors would like to thank the editor and the reviewer for their valuable comments and suggestions that led a significant improvement of the original manuscript.

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Authors and Affiliations

  1. Office of Healthcare Inspections, Office of Inspector General, US Department of Veterans Affairs, 801 I Street, NW, Room 1018, Washington, DC, 20001, USA

    Limin X. Clegg

  2. Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA

    Limin X. Clegg, Marsha E. Reichman, Benjamin F. Hankey, Barry A. Miller, Yi D. Lin & Brenda K. Edwards

  3. School of Medicine, Monash University, Melbourne, VIC, Australia

    Yi D. Lin

  4. U.S. Bureau of Census, Suitland, MD, USA

    Norman J. Johnson & Charles C. Lin

  5. Program in Epidemiology, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    Stephen M. Schwartz

  6. Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

    Leslie Bernstein

  7. Louisiana Tumor Registry, LSU School of Public Health, New Orleans, LA, USA

    Vivien W. Chen

  8. Cancer Research Center, University of Hawaii, Honolulu, HI, USA

    Marc T. Goodman

  9. Northern California Cancer Center, Fremont, CA, USA

    Scarlett L. Gomez

  10. Karmanos Cancer Institute, Wayne State University, Detroit, MI, USA

    John J. Graff

  11. State Health Registry of Iowa, University of Iowa, Iowa City, IA, USA

    Charles F. Lynch

Authors
  1. Limin X. Clegg
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  2. Marsha E. Reichman
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  3. Benjamin F. Hankey
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  4. Barry A. Miller
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  5. Yi D. Lin
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  6. Norman J. Johnson
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  7. Stephen M. Schwartz
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  8. Leslie Bernstein
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  9. Vivien W. Chen
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  10. Marc T. Goodman
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  11. Scarlett L. Gomez
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  12. John J. Graff
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  13. Charles F. Lynch
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  14. Charles C. Lin
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  15. Brenda K. Edwards
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Correspondence to Limin X. Clegg.

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Clegg, L.X., Reichman, M.E., Hankey, B.F. et al. Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies. Cancer Causes Control 18, 177–187 (2007). https://doi.org/10.1007/s10552-006-0089-4

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  • DOI: https://doi.org/10.1007/s10552-006-0089-4

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