Clarke Lisa C, Rull Rudolph P, Ayanian John Z, Boer Robert, Deapen Dennis, West Dee W, Kahn Katherine L
*Epidemiology Program, County of Marin, San Rafael, CA†School of Community Health Sciences, University of Nevada, Reno, Reno, NV‡Department of Health Research and Policy, Stanford School of Medicine, Stanford, CA§Brigham and Women's Hospital∥Department of Health Policy, Harvard Medical School, Boston, MA¶Department of Public Health, Erasmus Medical Center, Rotterdam, The Netherlands#Department of Preventive Medicine, Keck School of Medicine and Norris Comprehensive, Cancer Center, University of Southern California, Los Angeles**Cancer Prevention Institute of California, Fremont††The RAND Corporation, Santa Monica‡‡UCLA School of Medicine, Los Angeles, CA.
Med Care. 2016 Jan;54(1):e1-8. doi: 10.1097/MLR.0b013e3182a30350.
Accurate information regarding race, ethnicity, and national origins is critical for identifying disparities in the cancer burden.
To examine the use of a Spanish surname list to improve the quality of race-related information obtained from rapid case ascertainment (RCA) and to estimate the accuracy of race-related information obtained from cancer registry records collected by routine reporting.
Self-reported survey responses of 3954 participants from California enrolled in the Cancer Care Outcomes Research and Surveillance Consortium.
Sensitivity, specificity, positive predictive value, and percent agreement. We used logistic regression to identify predictors of underreporting and overreporting of a race/ethnicity.
Use of the Spanish surname list increased the sensitivity of RCA for Latino ethnicity from 37% to 83%. Sensitivity for cancer registry records collected by routine reporting was ≥95% for whites, blacks, and Asians, and specificity was high for all groups (86%-100%). However, patterns of misclassification by race/ethnicity were found that could lead to biased cancer statistics for specific race/ethnicities. Discordance between self-reported and registry-reported race/ethnicity was more likely for women, Latinos, and Asians.
Methods to improve race and ethnicity data, such as using Spanish surnames in RCA and instituting data collection guidelines for hospitals, are needed to ensure minorities are accurately represented in clinical and epidemiological research.
关于种族、族裔和国籍的准确信息对于识别癌症负担方面的差异至关重要。
研究使用西班牙姓氏列表来提高从快速病例确定（RCA）中获取的种族相关信息的质量，并估计从常规报告收集的癌症登记记录中获取的种族相关信息的准确性。
来自加利福尼亚州参与癌症护理结果研究与监测联盟的3954名参与者的自我报告调查答复。
敏感性、特异性、阳性预测值和一致百分比。我们使用逻辑回归来确定种族/族裔报告不足和报告过度的预测因素。
使用西班牙姓氏列表将RCA对拉丁裔族裔的敏感性从37%提高到了83%。常规报告收集的癌症登记记录对白人、黑人和亚洲人的敏感性≥95%，所有组的特异性都很高（86%-100%）。然而，发现了按种族/族裔分类错误的模式，这可能导致特定种族/族裔的癌症统计数据存在偏差。自我报告和登记报告的种族/族裔之间的不一致在女性、拉丁裔和亚洲人中更为常见。
需要采取一些方法来改善种族和族裔数据，比如在RCA中使用西班牙姓氏以及为医院制定数据收集指南，以确保少数群体在临床和流行病学研究中得到准确体现。
