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

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.