Purpose

Race and Hispanic ethnicity data can be challenging for central cancer registries to collect. We evaluated the accuracy of the race and Hispanic ethnicity variables collected by the Utah Cancer Registry compared to self-report.

Methods

Participants were 3,162 cancer survivors who completed questionnaires administered in 2015–2022 by the Utah Cancer Registry. Each survey included separate questions collecting race and Hispanic ethnicity, respectively. Registry-collected race and Hispanic ethnicity were compared to self-reported values for the same individuals. We calculated sensitivity and specificity for each race category and Hispanic ethnicity separately.

Results

Survey participants included 323 (10.2%) survivors identifying as Hispanic, a lower proportion Hispanic than the 12.1% in the registry Hispanic variable (sensitivity 88.2%, specificity 96.5%). For race, 43 participants (1.4%) self-identified as American Indian or Alaska Native (AIAN), 32 (1.0%) as Asian, 23 (0.7%) as Black or African American, 16 (0.5%) Pacific Islander (PI), and 2994 (94.7%) as White. The registry race variable classified a smaller proportion of survivors as members of each of these race groups except White. Sensitivity for classification of race as AIAN was 9.3%, Asian 40.6%, Black 60.9%, PI 25.0%, and specificity for each of these groups was > 99%. Sensitivity and specificity for White were 98.8% and 47.4%.

Conclusion

Cancer registry race and Hispanic ethnicity data often did not match the individual’s self-identification. Of particular concern is the high proportion of AIAN individuals whose race is misclassified. Continued attention should be directed to the accurate capture of race and ethnicity data by hospitals.

中文翻译：

---

中央癌症登记处患者种族和民族数据的准确性

目的

对于中央癌症登记处来说，收集种族和西班牙裔数据可能具有挑战性。我们评估了犹他州癌症登记处收集的种族和西班牙裔种族变量与自我报告的准确性。

方法

参与者是 3,162 名癌症幸存者，他们完成了犹他州癌症登记处 2015 年至 2022 年发放的调查问卷。每项调查都包括分别收集种族和西班牙裔的单独问题。将登记处收集的种族和西班牙裔种族与同一个人的自我报告值进行比较。我们分别计算了每个种族类别和西班牙裔的敏感性和特异性。

结果

调查参与者包括 323 名西班牙裔幸存者 (10.2%)，西班牙裔比例低于登记中西班牙裔变量的 12.1%（敏感性 88.2%，特异性 96.5%）。在种族方面，43 名参与者 (1.4%) 自认为是美洲印第安人或阿拉斯加原住民 (AIAN)，32 名参与者 (1.0%) 为亚洲人，23 名参与者 (0.7%) 为黑人或非裔美国人，16 名参与者 (0.5%) 为太平洋岛民 (PI) ），2994（94.7%）为白人。登记种族变量将较小比例的幸存者分类为除白人之外的每个种族群体的成员。将种族分类为 AIAN 的敏感性为 9.3%，亚洲人为 40.6%，黑人为 60.9%，PI 为 25.0%，并且每个组的特异性均 > 99%。白色的敏感性和特异性分别为 98.8% 和 47.4%。

结论

癌症登记种族和西班牙裔种族数据往往与个人的自我认同不符。特别值得关注的是，AIAN 个体中种族被错误分类的比例很高。应继续关注医院准确获取种族和民族数据。