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Cancer Causes Control. 2018 Nov 3. doi: 10.1007/s10552-018-1091-3. [Epub ahead of print]

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

Author information

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.layne@nih.gov.
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.
3
Behavioral and Epidemiology Research Group, American Cancer Society, 250 Williams Street, Atlanta, GA, 30303, USA.
4
Connecticut Tumor Registry, Connecticut Department of Public Health, 410 Capitol Avenue, MS# 13TMR, Hartford, CT, 06134-0308, USA.

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.

KEYWORDS:

Cancer registries; Cancer survivors; Disparities; Ethnicity; Race; Self-report

PMID:
30392148
DOI:
10.1007/s10552-018-1091-3

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