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Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society’s studies of cancer survivors

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Abstract

Purpose

To examine the concordance between cancer registry and self-reported data for race, Hispanic ethnicity, and cancer type in the American Cancer Society’s Studies of Cancer Survivors (SCS) I and II.

Methods

We calculated sensitivity, specificity, positive predictive value, and Kappa statistics for SCS-I and II. The gold standard for cancer type was registry data and for race and ethnicity was self-reported questionnaire data.

Results

Among 6,306 survivors in SCS-I and 9,170 in SCS-II, overall agreement (Kappa) for cancer type was 0.98 and 0.99, respectively. Concordance was strongest for breast and prostate cancer (Sensitivity ≥ 0.98 in SCS-I and II). For race, Kappa was 0.85 (SCS-I) and 0.93 (SCS-II), with strong concordance for white (Sensitivity = 0.95 in SCS-I and 0.99 in SCS-II) and black survivors (Sensitivity = 0.94 in SCS-I and 0.99 in SCS-II), but weak concordance for American Indian/Alaska Native (Sensitivity = 0.23 in SCS-I and 0.19 in SCS-II) and Asian/Pacific Islander survivors (Sensitivity = 0.43 in SCS-I and 0.87 in SCS-II). Agreement was moderate for Hispanic ethnicity (Kappa = 0.73 and 0.71; Sensitivity = 0.74 and 0.76, in SCS-I and SCS-II, respectively).

Conclusions

We observed strong concordance between cancer registry data and self-report for cancer type in this national sample. For race and ethnicity, however, concordance varied significantly, with the poorest concordances observed for American Indian/Alaska Native and Asian/Pacific Islander survivors. Ensuring accurate recording of race/ethnicity data in registries is crucial for monitoring cancer trends and addressing cancer disparities among cancer survivors.

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Acknowledgments

We wish to acknowledge the cooperation and efforts of the cancer registries and public health departments from the states of Alabama, Arizona, California (Regions 2–6), Colorado, Connecticut, Delaware, Illinois, Iowa, Idaho, Maine, Massachusetts, Michigan, Minnesota, Nebraska, New Jersey, Ohio, Pennsylvania, Rhode Island, South Carolina, Washington, and Wyoming. We also thank the staff of the hundreds of hospitals, including Stamford Hospital, which reported cases to the participating cancer registries. Certain data used in this study were obtained from the Connecticut Tumor Registry located in the Connecticut Department of Public Health. Lastly, we are grateful to the thousands of cancer survivors, their physicians, and their loved ones who contributed to the collection of these data. The authors assume full responsibility for analyses and interpretation of these data.

Funding

The American Cancer Society (ACS) Studies of Cancer Survivors (SCS) was supported by the intramural program of research conducted by the ACS Behavioral Research Center.

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Authors and Affiliations

  1. Metabolic Epidemiology Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, 9609 Medical Center Drive, Room 6E324, MSC 9768, Bethesda, MD, 20892, USA

    Tracy M. Layne

  2. Department of Chronic Disease Epidemiology, Yale Comprehensive Cancer Center, Yale School of Public Health, 55 Church Street, Suite 801, New Haven, CT, 06510, USA

    Leah M. Ferrucci, Beth A. Jones & Brenda Cartmel

  3. Behavioral and Epidemiology Research Group, American Cancer Society, 250 Williams Street, Atlanta, GA, 30303, USA

    Tenbroeck Smith

  4. Connecticut Tumor Registry, Connecticut Department of Public Health, 410 Capitol Avenue, MS# 13TMR, Hartford, CT, 06134-0308, USA

    Lou Gonsalves

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  1. Tracy M. Layne
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Correspondence to Tracy M. Layne.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Layne, T.M., Ferrucci, L.M., Jones, B.A. et al. Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society’s studies of cancer survivors. Cancer Causes Control 30, 21–29 (2019). https://doi.org/10.1007/s10552-018-1091-3

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