Hispanic Identification in the Illinois State Cancer Registry by Therese A. Dolecek, Ph.D. Holly L. Howe, Ph.D. Division of Epidemiologic Studies A Publication of the Illinois Department of Public Health Division of Epidemiologic Studies Illinois State Cancer Registry Springfield, IL 67261 June 1998 Acknowledgments The authors express their gratitude to the staff of the Illinois State Cancer Registry and to all of the staff members at reporting facilities for providing the data that made the study of Hispanic identification in the Illinois State Cancer Registry possible. Special thanks to Mr. David Word with the United States Bureau of the Census and senior author of the working paper, Building a Spanish Surname List for the 1990's–A New Approach to An Old Problem, for providing guidance in the application of the approach to cancer registry data in Illinois. Suggested citation Dolecek TA, Howe HL. Hispanic Identification in the Illinois State Cancer Registry. Epidemiologic Report Series 98:2. Springfield, Ill.: Illinois Department of Public Health, June 1998. Copyright information All material in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated. Table of Contents Executive Summary ................................................................ 1 Introduction ...................................................................... 3 Objectives ....................................................................... 3 Methods ........................................................................ 5 Information Sources for Hispanic Identification ........................................ 5 ISCR Hispanic Origin Data Element ................................................ 5 Birthplace and Race ............................................................. 5 Surnames .................................................................... 6 Application in Illinois ........................................................... 7 Procedures .................................................................... 7 Results and Discussion ............................................................ 13 ISCR Hispanic Origin Data Element ............................................... 13 ISCR Hispanic Ancestral Subgroup Distribution Compared with SEER 1988 to1992 ........... 13 ISCR Hispanic Identification for Agreement Compared with Illinois Death Certificates ......... 15 Birthplace ................................................................... 15 Comparison of ISCR Surnames with Census Spanish Surname Study ....................... 16 ISCR Surnames by Collapsed Census Spanish Surname Study Categories ................... 17 Surnames for Cancer Cases Born in Hispanic Non-U.S. Birthplaces ....................... 18 American Indian, Filipino and Hawaiian Cancer Case Last Names ......................... 18 Effects of Surname Adjustment on Hispanic Non-U.S. Birthplace As Hispanic Identifier ........ 18 Hispanic Identification .......................................................... 19 Hispanic Cancer Incidence Rates .................................................. 21 Conclusions ..................................................................... 25 Limitations ..................................................................... 27 References ...................................................................... 29 Tables ......................................................................... 31 Appendix A. Additional Tables ...................................................... 71 Appendix B. Alphabetical and Categorical Listing of United States Bureau of the Census Heavily Hispanic Last Names on the ISCR Database 1986 to1994 ................. 86 Executive Summary A comprehensive study of Hispanic identification in the Illinois State Cancer Registry (ISCR) was conducted for the purpose of establishing a policy that defines the reporting of Hispanic cancer incidence in Illinois. In 1989, an Hispanic origin data element was introduced on the ISCR incidence report form as a requirement for data acquisition by cancer registrars in Illinois. It was found that cancer registrars were able to identify approximately 75 percent to 80 percent of Hispanic cancer cases using resources available to them. Indirect identifiers including birthplace and surname were examined to determine if development of an algorithm that used both direct and indirect information on Hispanics could improve case ascertainment on ISCR. Birthplaces not in the United States (U.S.) that suggest probable Hispanic ethnic status include Central America (Guatemala, Belize, Honduras, El Salvador, Nicaragua, Costa Rica and Panama), Cuba, Mexico, Puerto Rico, South America (Colombia, Venezuela, Ecuador, Peru, Bolivia, Chile, Argentina, Paraguay and Uruguay) and Spain (Canary Islands, Balearic Islands and Andorra). An evaluation of cases born in Hispanic non-U.S. birthplaces indicated that the use of birthplace information could enhance Hispanic casefinding on ISCR. In addition, Spanish surnames are known to be predictors of Hispanic status. In March 1996, a Spanish surname list developed through special study of 1990 census surnames and Hispanic origin responses, became available to facilitate Hispanic identification in the U.S. Evaluation of the census Spanish surname approach indicated that it was applicable to the Hispanic population in Illinois and was suitable for indirect Hispanic identification of cases on the ISCR database. It was determined that a combination of direct and indirect Hispanic identification was necessary to produce the most complete ascertainment of Hispanic cancer cases. An algorithm was created using both direct (ISCR Hispanic origin) and indirect (Hispanic non-U.S. birthplace and heavily Hispanic surname as classified according to the census bureau Spanish surname study) identifiers that maximized the probability of correct Hispanic identification of ISCR cases. Hispanic cancer incidence will be reported using the established algorithm for reports and special studies in the Division of Epidemiologic Studies. More valid and reliable cancer incidence data on the Hispanic population residing in Illinois should guide future cancer control and prevention programs for this rapidly growing ethnic group. Introduction In recent decades, the Hispanic population has been the most rapidly growing race/ethnic group within the United States (U.S.) increasing, by some estimates, at a rate five times that of the rest of the U.S. population.1 Due to high birth rates and immigration patterns among the group, such growth is projected to continue well into the next century. By the year 2000, Hispanics may become the largest minority group in the nation.2 A population presence of this nature necessitates targeted health care planning at federal, state and local levels. Such activities require valid and reliable data on the respective population to form a basis for accurate needs assessments and subsequent program planning, implementation and surveillance. However, program development for Hispanics has been impeded due to a lack of health-related data on the group. Only recently have changes in the organized U.S. data collection systems specifically targeted the Hispanic population. This problem is especially important for Illinois because it is among the 11 states where the country's Hispanic population is concentrated. Illinois’ Hispanic population numbered approximately 910,000 in 1990, or about 7.9 percent of the state’s total population.3 In 1980, the number of Hispanics in Illinois was approximately 636,000, or 5.6 percent of the total state population.4 Intercensal estimates for 1996 show Hispanics to number over 1.1 million, now about 9.6 percent of Illinois’ total population.3 The dynamics observed for the nation’s Hispanic population also are apparent for Hispanics residing in Illinois. Therefore, the purpose of this study was to conduct a comprehensive evaluation of current Hispanic identification in the Illinois State Cancer Registry. In addition, the use of algorithms to validate or to enhance identification using indirect sources was studied with the intention of producing the most accurate information possible on cancer incidence among Illinois' Hispanic population to guide future cancer control and prevention programs. Objectives 1. To assess Hispanic identification across the ISCR database from 1986 to 1994 2. To determine the applicability of a U.S. Bureau of the Census Spanish surname product, made available in March 1996, to Hispanic identification needs by ISCR 3. To establish an effective methodology for identifying Hispanic cancer cases on the ISCR database using all relevant information available for the study of cancer incidence trends among the ethnic group 3 Methods Information Sources for Hispanic Identification ISCR and other cancer registries have used several sources of information to study Hispanic identification on their databases.5 Specific Hispanic origin data elements, birthplace, race and surnames are variables found to be important for direct or indirect identification. The ISCR database contains data in varying degreesof completeness for all of these Hispanic information sources. ISCR Hispanic Origin Data Element Table 1 shows an historical presentation of the Hispanic origin data elements from inception of ISCR in 1985 to the present. Initially, Hispanic origin was not collected using a separate element on the incidence report form. Rather, cancer registrars