Introduction: Prior studies indicate that minority groups are underrepresented in the National Cancer Database however it is unclear based on previous analyses if this representation has changed over time.
Methods: Retrospective cohort study of patients with a diagnosis of Kidney Cancer in the United States Cancer Statistics (USCS) and the National Cancer Database (NCDB). The USCS includes cancer incidence data from the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program combined with the Center for Disease Control and Prevention’s National Program of Cancer Registries, together capturing roughly 100% of incident cancer cases.
We stratified patients as Non-Hispanic White, Black, Asian/Pacific Islander, American Indian/Alaskan Native, and Hispanic. We collated patients diagnosed with kidney cancer into two groups, patients diagnosed between 2005 – 2007 and 2015-2017. The capture rate was defined as the number of patients diagnosed in NCDB compared to the USCS. We calculated the Absolute Percentage Change (APC) between the two time periods. We then performed Pearson’s Chi Squared Distribution test to compare the representation of race/ethnicity between the two time periods. Lastly, we performed Pearson’s Chi Squared Distribution test to compare the representation of Non-Hispanic White patients to other Race/Ethnic groups in the time period 2015-2017.
Results: In this study we evaluated 338,987 patients, which included 194,222 patients from 2015-2017 and 144,765 patients in the year 2005-2007 (Table 1). The capture rate of cancer diagnoses increased for all race/ethnic groups over time. The representation of Asian/Pacific Islanders increased (APC +18.49%, p<0.001, Non-Hispanic Whites increased (APC + 13.75%, p<0.001), Blacks (APC +13.37%, p<0.001),), and American Indian/Alaska Natives (APC +13.75%, p<0.001). The APC for Hispanics increased by the lowest degree (APC +6.29, <0.001). Compared to Non-Hispanic Whites, Hispanics and American Indian/Alaska Natives had the lowest capture rate in NCDB (78.58% vs. 54.59%,) and (78.58% 43.62%) respectively.
Conclusions: In this study we found that Hispanics and American Indian/Alaska Natives are not well represented in NCDB, capturing less than ~55% of cases. Furthermore, NCDB may not accurately reflect cancer care for patients in these diverse groups as many patients are seeking cancer care in the community and not at Commission on Cancer-accredited facilities.