Cancer Causes and Control
Volume 18, Issue 2, 2007, Pages 177-187

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

Clegg L.X.* , Reichman M.E. , Hankey B.F. , Miller B.A. , Lin Y.D. , Johnson N.J. , Schwartz S.M. , Bernstein L. , Chen V.W. , Goodman M.T. , Gomez S.L. , Graff J.J. , Lynch C.F. , Lin C.C. , Edwards B.K.
  • a Office of Healthcare Inspections, Office of Inspector General, US Department of Veterans Affairs, 801 I Street, NW, Washington, DC 20001, United States, Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, United States
  • b Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, United States
  • c Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, United States
  • d Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, United States
  • e Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, United States, School of Medicine, Monash University, Melbourne, Vic., Australia
  • f U.S. Bureau of Census, Suitland, MD, United States
  • g Program in Epidemiology, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA, United States
  • h Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, United States
  • i Louisiana Tumor Registry, LSU School of Public Health, New Orleans, LA, United States
  • j Cancer Research Center, University of Hawaii, Honolulu, HI, United States
  • k Northern California Cancer Center, Fremont, CA, United States
  • l Karmanos Cancer Institute, Wayne State University, Detroit, MI, United States
  • m State Health Registry of Iowa, University of Iowa, Iowa City, IA, United States
  • n U.S. Bureau of Census, Suitland, MD, United States
  • o Surveillance Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, United States

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. © 2007 Springer Science+Business Media B.V.

Author Keywords

Surveillance Ethnicity and immigrant status NLMS National Longitudinal Mortality Study race Epidemiology End Results SEER

Index Keywords

immigrant cancer patient Bias (Epidemiology) race difference Population Surveillance Continental Population Groups human Longitudinal Studies cancer survival priority journal cancer epidemiology Hispanic Americans Kaplan Meier method American Indian United States Humans Hispanic male cancer statistics American Native Continental Ancestry Group female Kaplan-Meiers Estimate quality control population research cancer registry sensitivity and specificity Article survival time Emigration and Immigration ethnicity SEER Program mortality
Link
https://www.scopus.com/inward/record.uri?eid=2-s2.0-33846816492&doi=10.1007%2fs10552-006-0089-4&partnerID=40&md5=52d0009e0733c4dd4d6c36d7a93a968d
DOI: 10.1007/s10552-006-0089-4
ISSN: 09575243
Cited by: 121
Original Language: English