Quality of cancer registry birthplace data for Hispanics living in the United States
Abstract
Patient birthplace from the SEER population-based cancer registries is potentially useful for identifying disparities in cancer occurrence and for studying cancer etiology. However, for Hispanics, completeness and accuracy of registry birthplace is unknown. By comparing registry birthplace to self-reported birthplace from 13 interview studies, we determined the completeness and accuracy of this variable and the associations of these measures with patient and hospital characteristics in the Greater Bay Area. Registry birthplace was unrecorded for 46% of 1277 Hispanic cancer cases, and unrecorded birthplace (i.e., incompleteness) was associated with younger age, higher education, English language preference, US birthplace, and admission at certain hospitals. For 691 Hispanics with available registry birthplace, sensitivity and positive predictive value compared to self-report (i.e., accuracy) were 96.3 and 97.3 among foreign-born, and 96.8 and 95.6 among US-born. US-born Hispanics misclassified in the registry as foreign-born were more likely to have unavailable education information, be deceased, prefer a language besides English, and be diagnosed at a smaller hospital or before 1996. Among self-reported foreign-born Hispanics, those misclassified as US-born were less likely to have been diagnosed at an HMO. Although the completeness and accuracy of birthplace information may vary across registries, this variable appears to be limited for analyses involving Hispanics.
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Ten of these (66%) identified that the incomplete data led to validity issues, most commonly that these data were not missing at random and had the potential to introduce bias.
“Ten of these (66%) identified that the incomplete data led to validity issues, most commonly that these data were not missing at random and had the potential to introduced bias.12,34,43–50”
From The quality of social determinants data in the electronic health record: a systematic review (2021) · cites this paper as [47]
Cites
Gomez, S. L., Glaser, S. L., Kelsey, J. L., & Lee, M. M. (2004) · Cancer Causes & Control · doi:10.1023/b:caco.0000024244.91775.64 · Cited by 60 · cited 3× · see citing works
“In addition, we recently documented a bias in the completeness of birthplace data for Asians [ 20 ], suggesting that the utility of birthplace data in this group is potentially limited for the types of analyses described above.”
BackgroundMethodResultInfluentialSelf-citation
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Misclassification of race/ethnicity in a population-based cancer registry (United States)
Gomez, S. L., & Glaser, S. L. (2006) · Cancer Causes & Control · doi:10.1007/s10552-006-0013-y · Cited by 167 · see citing works
“, those with ‡200 beds) were more likely than smaller facilities to report collecting data on race/ethnicity [15] and to collect more complete data on patient birthplace [12, 14].”
Self-citationThe quality of social determinants data in the electronic health record: a systematic review
Cook, L. A., Sachs, J., & Weiskopf, N. G. (2021) · Journal of the American Medical Informatics Association · doi:10.1093/jamia/ocab199 · Cited by 153 · see citing works
Gomez, S., Glaser, S., McClure, L. A., Shema, S., Kealey, M., Keegan, T., & Satariano, W. (2011) · Cancer Causes and Control · doi:10.1007/s10552-011-9736-5 · Cited by 107 · see citing works
“In addition to a range of patient demographic and tumor information, the CCR also includes data on the reporting (usually diagnosing) hospital for each diagnosis and has been linked to hospital utilization data from the California Office of Statewide Health Planning and Development (OSHPD) to include information on ho…”
Self-citationKeegan, T., John, E., Fish, K. M., Alfaro-Velcamp, T., Clarke, C., & Gomez, S. (2010) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-10-0021 · Cited by 100 · see citing works
“Such an analysis has not been conducted, in part, due to missing data about birthplace for a sizable proportion (∼25%) of Hispanic cancer cases in cancer registry data (21, 22).”
BackgroundSelf-citationPrognostic significance of marital status in breast cancer survival: A population-based study
Martı́nez, M. E., Unkart, J., Li, T., Kroenke, C. H., Schwab, R. B., Komenaka, I. K., & Gomez, S. L. (2017) · PLoS ONE · doi:10.1371/journal.pone.0175515 · Cited by 106 · see citing works
Self-citationChang, E., Yang, J., Alfaro-Velcamp, T., So, S., Glaser, S., & Gomez, S. (2010) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-10-0863 · Cited by 97 · see citing works
Self-citationHorner, M., Altekruse, S., Zou, J., Wideroff, L., Katki, H., & Stinchcomb, D. (2011) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-10-1183 · Cited by 94
“Hispanic ethnicity is often underreported on hospital records and death certificates (37, 38), and certain years”
Keegan, T., Quach, T., Shema, S., Glaser, S., & Gomez, S. (2010) · BMC Cancer · doi:10.1186/1471-2407-10-603 · Cited by 93
Self-citationRacial disparities in Hodgkin's lymphoma: a comprehensive population-based analysis.
Evens, A., Antillon, M., Aschebrook-Kilfoy, B., & Chiu, B. (2012) · Annals of Oncology · doi:10.1093/annonc/mdr578 · Cited by 91 · see citing works
Lymphoid malignancies in US Asians: incidence rate differences by birthplace and acculturation
Clarke, C., Glaser, S., Gomez, S., Wang, S. S., Keegan, T., Yang, J., & Chang, E. (2011) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-11-0038 · Cited by 91 · see citing works
“For cases for whom birthplace information was reported to the registry (the vast majority), we have also shown that this classification shows excellent agreement in comparison with self-reported birthplace (4, 5); for the remaining cases, we applied a validated birthplace classification algorithm with good sensitivity…”
Self-citationShah, S. C., McKinley, M. A., Gupta, S. N., Peek, R. M., Martı́nez, M. E., & Gomez, S. L. (2020) · Gastroenterology · doi:10.1053/j.gastro.2020.07.049 · Cited by 107 · see citing works
Self-citationPatel, M. I., Schupp, C. W., Gomez, S. L., Chang, E. T., & Wakelee, H. A. (2013) · Journal of Clinical Oncology · doi:10.1200/jco.2012.48.6217 · Cited by 89 · see citing works
Self-citationBirth Weight as a Risk Factor for Breast Cancer: A Meta-Analysis of 18 Epidemiological Studies
Xu, X., Dailey, A. B., Peoples‐Sheps, M. D., Talbott, E. O., Li, N., & Roth, J. (2009) · Journal of Women s Health · doi:10.1089/jwh.2008.1034 · Cited by 70 · see citing works
“Misclassification of cases might stem from the method of ascertaining the outcome through cancer registries as the result of possible incomplete reporting, 77–79 errors in the registry, 80–82 mismatched cases, 83 residential mobility, and subsequent losses to follow-up.”
Horn-ross, P., Lichtensztajn, D., Clarke, C., Dosiou, C., Oakley-Girvan, I., Reynolds, P., Gomez, S., & Nelson, D. O. (2014) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-13-1089 · Cited by 80 · see citing works
“Our prior research shows that these data, when available, are highly accurate at the level of US- and foreign-born (30, 31).”
Self-citationBanegas, M. P., Li, T., Altekruse, S. F., Anderson, W. F., John, E. M., Clarke, C. A., & Gomez, S. L. (2014) · Breast Cancer Research and Treatment · doi:10.1007/s10549-014-2882-1 · Cited by 64 · see citing works
“The imputation method used to classify nativity is subject to error and may have led to some misclassification; however, most participants (about 65 %) were classified based on cancer registry birthplace data, previously shown to have high accuracy [11, 36].”
Self-citationBlack Heterogeneity in Cancer Mortality: US-blacks, Haitians, and Jamaicans
Pinheiro, P., Callahan, K. E., Ragin, C., Hage, R., Hylton, T., & Kobetz, E. (2016) · Cancer Control: Journal of the Moffitt Cancer Cente · doi:10.1177/107327481602300406 · Cited by 64 · see citing works
Racial/ethnic variation in EBV-positive classical Hodgkin lymphoma in California populations
Glaser, S., Gulley, M., Clarke, C., Keegan, T., Chang, E., Shema, S., Craig, F., DiGiuseppe, J. A., Dorfman, R., Mann, R., et al. (2008) · International Journal of Cancer · doi:10.1002/ijc.23741 · Cited by 63
Self-citationImmigration Factors and Prostate Cancer Survival Among Hispanic Men in California
Schupp, C., Press, D., & Gomez, S. L. (2014) · Cancer · doi:10.1002/cncr.28587 · Cited by 62
“To our knowledge such an analysis has not been previously conducted in part due to missing data regarding birthplace for a sizable percentage (approximately 25%) of Hispanic cancer cases in CCR data.(18,19) Therefore, through statistical imputation of nativity for cancer cases with missing birthplace and in combinatio…”
Self-citationMartinez, M. E., Anderson, K., Murphy, J. D., Hurley, S., Canchola, A., Keegan, T. H., Cheng, I., Clarke, C. A., Glaser, S. L., & Gomez, S. (2016) · Cancer · doi:10.1002/cncr.29886 · Cited by 58
Self-citationChang, E., Gomez, S., Fish, K. M., Schupp, C., Parsonnet, J., Derouen, M. C., Keegan, T., Clarke, C., & Glaser, S. (2012) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-11-1208 · Cited by 57 · see citing works
“…false SSNs would have affected only some of the 15.3% of cases with missing birthplace data in the cancer registry; 84.7% of our nativity data was derived from patients’ medical records or death certificates, which we have previously shown to be highly accurate for birthplace information (39, 40).”
InfluentialSelf-citationAssessing race and ethnicity data quality across cancer registries and EMRs in two hospitals
Lee, S. J. C., Grobe, J. E., & Tiro, J. A. (2016) · Journal of the American Medical Informatics Association · doi:10.1093/jamia/ocv156 · Cited by 57 · see citing works
“Although important work has been done to examine data accuracy (eg, clinical information system data comparison to self-report), prior studies have only analyzed a central data source or a single setting.(11,17,19) Furthermore, studies that have examined central data sources, like state cancer registries or the Survei…”
BackgroundMontealegre, J., Zhou, R., Amirian, E., Follen, M., & Scheurer, M. (2013) · Cancer Causes and Control · doi:10.1007/s10552-013-0274-1 · Cited by 50
“This may be partly due to the limited ability to conduct analyses by birthplace due to the high prevalence and non-random distribution of missing birthplace data [43, 48–52].”
Influence of birthplace on breast cancer diagnosis and treatment for Hispanic women
Kouri, E., He, Y.-L., Winer, E., & Keating, N. (2010) · Breast Cancer Research and Treatment · doi:10.1007/s10549-009-0643-3 · Cited by 49 · see citing works
“Greater Bay Area Cancer Registry [36], we randomly assigned 56.”
BackgroundMethodInfluentialColorectal cancer incidence among Hispanics and non-Hispanic whites in the United States
Garcia, S., Pruitt, S., Singal, A., & Murphy, C. (2018) · Cancer Causes and Control · doi:10.1007/s10552-018-1077-1 · Cited by 47 · see citing works
Sung, H., DeSantis, C., Fedewa, S., Kantelhardt, E., & Jemal, A. (2019) · Cancer · doi:10.1002/cncr.32293 · Cited by 45 · see citing works
“Table 1 shows demographic and tumor characteristics according to birthplace among 65,211 black women with breast cancer in the United States.”
BackgroundInfluentialMartínez, M. E., Gomez, S., Li, T., Cress, R., Rodriguez, D., Unkart, J. T., Schwab, R. B., Nodora, J., Cook, L., Komenaka, I., et al. (2017) · Breast Cancer Research and Treatment · doi:10.1007/s10549-017-4389-z · Cited by 45
“Since birthplace is differentially missing between US- and foreign-born Hispanics, and by vital status [14], nativity was imputed for Hispanic patients with unknown birthplace using patients’ social security numbers (SSN).”
BackgroundSelf-citationFroment, M., Gomez, S., Roux, A., Derouen, M. C., & Kidd, E. (2014) · Gynecologic Oncology · doi:10.1016/j.ygyno.2014.03.559 · Cited by 37
“The cut point of 20 years was determined by comparisons with self-reported nativity from interviews with 1127 Hispanic cancer patients [16,17] as noted above.”
MethodSelf-citationGomez, N. G., Guendelman, S., Harley, K., & Gomez, S. (2015) · American Journal of Public Health · doi:10.2105/ajph.2014.302261 · Cited by 36
Self-citationUnderstanding the Limits of Large Datasets
Sanders, C., Saltzstein, S., Schultzel, M. M., Nguyen, D. H., Stafford, H. S., & Sadler, G. (2012) · Journal of Cancer Education · doi:10.1007/s13187-012-0383-7 · Cited by 35 · see citing works
“Explorations of large-scale databases are used to: (1) monitor changes in disease incidence and mortality, (2) develop public health interventions designed to make the best use of limited resources, (3) ground research foci and methodological approaches, (4) evaluate the impact of public health interventions on diseas…”
Quality of Cancer Care among Foreign-Born and US-Born Patients with Lung or Colorectal Cancer
Nielsen, S. S., He, Y.-L., Ayanian, J., Gomez, S. L., Kahn, K. L., West, D. W., & Keating, N. L. (2010) · Cancer · doi:10.1002/cncr.25546 · Cited by 35
“Income <$20,000 365 (20) 65 (30) 84 (32) 142 (44) 12 (18) 131 (38)”
InfluentialSelf-citationPruitt, S. L., Tiro, J. A., Xuan, L., & Lee, S. J. C. (2016) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph13121238 · Cited by 35 · see citing works
“First, although missing birthplace data in registries is a well-known phenomenon [25,27,29,30], missingness (60.”
BackgroundMedhanie, G. A., Fedewa, S., Adissu, H., DeSantis, C., Siegel, R., & Jemal, A. (2017) · Cancer · doi:10.1002/cncr.30701 · Cited by 32 · see citing works
Disparities in endometrial cancer outcomes between non-Hispanic White and Hispanic women.
Rodriguez, A. M., Schmeler, K., & Kuo, Y. (2014) · Gynecologic Oncology · doi:10.1016/j.ygyno.2014.10.021 · Cited by 32
“Often, Hispanic SEER registry birthplace data is missing or unknown [22].”
BackgroundGlaser, S., Clarke, C., Chang, E. T., Yang, J., Gomez, S. L., & Keegan, T. H. (2014) · Cancer Causes and Control · doi:10.1007/s10552-014-0374-6 · Cited by 31
“However, migrant studies of HL in US Hispanics have been impeded by methodologic challenges, including cultural and genetic heterogeneity [23–28], which can dilute study findings, and missing cancer registry information on birthplace for a sizeable, non-random segment of cases, which may introduce bias into estimated…”
Self-citationShariff-Marco, S., Gomez, S., Canchola, A., Fullington, H., Hughes, A., Zhu, H., & Pruitt, S. (2020) · Cancer · doi:10.1002/cncr.32845 · Cited by 27 · see citing works
“Birthplace often is missing from registry data.(36-39) Imputation is necessary because dropping patients for whom information regarding birthplace is missing reduces generalizability and introduces bias due to the unique reasons why the data are missing.”
BackgroundSelf-citationLi, T., Ladabaum, U., Gomez, S. L., & Cheng, I. (2014) · Cancer · doi:10.1002/cncr.28837 · Cited by 27
“The cutpoint of 20 years was determined by comparison with self-reported nativity from interviews with 1127 Hispanic patients with cancer and maximization of the area under the resultant receiver operating characteristic curve.(22,23) The selected cutpoint resulted in immigrant status classifications associated with 8…”
MethodSelf-citationGomez, S., Press, D., Lichtensztajn, D., Keegan, T., Shema, S., Le, G., & Kurian, A. (2012) · Cancer Epidemiology, Biomarkers and Prevention · doi:10.1158/1055-9965.epi-11-1143 · Cited by 25 · see citing works
“Because the ~30% of AA patients in the cancer registry with unknown birthplace data are more likely to be US-born than those with available data (33, 42-44), we applied a validated method based on patients’ Social Security numbers (SSN) to classify patient immigrant status for patients with unknown data, as described…”
MethodSelf-citationThe Influence of Hispanic Ethnicity on Nonsmall Cell Lung Cancer Histology and Patient Survival
Gomez, S. L., Schupp, C., & Patel, M. I. (2012) · Cancer · doi:10.1002/cncr.27799 · Cited by 22
“With regard to birthplace, SEER data are well documented to be incomplete (ie, unknown) for up to one-third of Hispanic cases, and those without a recorded birthplace have been shown to be more likely to be US-born and alive.(2,3) These findings have significant implications for the accuracy of survival analyses compa…”
BackgroundSelf-citationImproving hospital reporting of patient race and ethnicity—approaches to data auditing
Zingmond, D. S., Parikh, P., Louie, R., Lichtensztajn, D. Y., Ponce, N., Hasnain‐Wynia, R., & Gomez, S. L. (2015) · Health Services Research · doi:10.1111/1475-6773.12324 · Cited by 20 · see citing works
“Questions remain as to the consistency in collection of these data within and across hospitals (Stewart et al. 1999; Kressin et al. 2003; Gomez and Glaser 2005; Gomez et al. 2005).”
BackgroundSelf-citationVariation in type II endometrial cancer risk by Hispanic subpopulation: An exploratory analysis.
Schlumbrecht, M., Bispo, J. A. B., Balise, R., Huang, M., Slomovitz, B., & Kobetz, E. (2017) · Gynecologic Oncology · doi:10.1016/j.ygyno.2017.09.002 · Cited by 19 · see citing works
Glaser, S., Canchola, A., Keegan, T., Clarke, C., Longacre, T., & Gulley, M. (2017) · Cancer Causes and Control · doi:10.1007/s10552-017-0865-3 · Cited by 15
“As birthplace is missing differentially between US- and foreign-born Hispanics in registry data [23], we imputed nativity, when missing, using a validated method based on issuance date of the patient’s social security number [24].”
MethodSelf-citationGomez, S., Lichtensztajn, D., Parikh, P., Hasnain-Wynia, R., Ponce, N., & Zingmond, D. (2014) · Journal of health care for the poor and underserved · doi:10.1353/hpu.2014.0126 · Cited by 15
Self-citationMontealegre, J., Zhou, R., Amirian, E., & Scheurer, M. (2014) · Cancer · doi:10.1002/cncr.28533 · Cited by 15
“Furthermore, the distribution of missing data are nonrandom and is related to variables including nativity, vital status, age, sex, ethnicity, and certain hospital characteristics.(9-13) Of particular concern for nativity disparities research is the observation that missing birthplace data are more common among US-born”
BackgroundBirthplace and esophageal cancer incidence patterns among Asian-Americans
Kim, J. Y., Winters, J. K., Kim, J., Bernstein, L., Raz, D., & Gomez, S. (2014) · Diseases of the esophagus · doi:10.1111/dote.12302 · Cited by 14 · see citing works
Self-citationNativity and papillary thyroid cancer incidence rates among Hispanic women in California
Horn-ross, P., Chang, E., Clarke, C., Keegan, T., Rull, R. P., Quach, T., & Gomez, S. (2011) · Cancer · doi:10.1002/cncr.26223 · Cited by 14
“Our research has shown that cancer cases with missing birthplace data are more likely to be alive, of younger age, and US-born than those with known data, and thus, random imputation of birthplace will underestimate rates in US-born individuals and overestimate them in foreign-born individuals.(12,13,35,36) The SSN-ba…”
MethodSelf-citationPinheiro, L. C., Check, D. K., Rosenstein, D., Reeder-Hayes, K., & Dusetzina, S. (2018) · Supportive Care in Cancer · doi:10.1007/s00520-018-4406-8 · Cited by 11 · see citing works
Liu, L.-H., Tanjasiri, S., & Cockburn, M. (2011) · Journal of Immigrant and Minority Health · doi:10.1007/s10903-010-9381-1 · Cited by 11
“Previous studies have reported biases in reporting birthplace information among Asians and Hispanics in population-based cancer registry [19, 20].”
BackgroundMartínez, M. E., Gomez, S., Li, T., Cress, R., Rodriguez, D., Unkart, J. T., Schwab, R. B., Nodora, J., Cook, L., Komenaka, I., et al. (2017) · Breast Cancer Research and Treatment · doi:10.1007/s10549-017-4455-6 · Cited by 10
Self-citationPolednak, A. (2007) · Cancer Detection and Prevention · doi:10.1016/j.cdp.2007.04.007 · Cited by 7
“, deceased patients are more likely to have known birthplace, as obtained from death certificates) [14,15].”
BackgroundLack of improvement in survival rates for women under 50 with endometrial cancer, 2000–2011
Rodriguez, A. M., Schmeler, K., & Kuo, Y. (2016) · Journal of Cancer Research and Clinical Oncology · doi:10.1007/s00432-015-2092-1 · Cited by 6
Polednak, A. P. (2007) · Cancer Detection and Prevention · doi:10.1016/j.cdp.2007.10.015 · Cited by 3 · see citing works
Glaser, S., Clarke, C. A., & Gomez, S. L. (2013) · Annals of Oncology · doi:10.1093/annonc/mdt487
“They justify the use of incomplete nativity data by citing both our observations that nativity, where available, is accurate [3, 4], and the previous use of incomplete data.”
BackgroundSelf-citationLally, B., Hu, J. J., & Koniaris, L. (2013) · Cancer · doi:10.1002/cncr.27797
- Authors
- Gomez, S. L., & Glaser, S. L.
- Affiliations
- Cancer Prevention Institute of California (US)
- Corresponding author
- Gomez, Scarlett L.
- Venue
- Cancer Causes & Control
- Published
- 2005-08
- Volume
- 16
- Issue
- 6
- Pages
- 713-723
- ISSN
- 0957-5243 (ISSN-L)
- 1573-7225
- OpenAlex
- W1980178424
- Cited by
- 61
- References
- 0
- Citations by year
- 2024: 2 · 2022: 2 · 2021: 1 · 2020: 2 · 2019: 1 · 2018: 2 · 2017: 6 · 2016: 3 · 2015: 4 · 2014: 11 · 2013: 3 · 2012: 6
- FWCI
- 0.62
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Cancer Causes & Control (publishedVersion)
- PubMed (publishedVersion)
- Funders
- U.S. Department of Health and Human Services
- National Institutes of Health (n01cn065107-001)
- National Cancer Institute (N01-CN-65107)
- Topics
- Health Sciences › Medicine › Oncology › Global Cancer Incidence and Screening
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Keywords
- SEER, data completeness, data accuracy, cancer disparities, hospital characteristics, cancer etiology, Greater Bay Area
- MeSH terms
- Adult, Aged, Aged, 80 and over, Emigration and Immigration, Female, Hispanic or Latino, Humans, Middle Aged, Neoplasms, Registries, Residence Characteristics, Odds Ratio, SEER Program
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