Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies
Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies
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DOI：
10.1007/s10552-006-0089-4
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发表时间：
2007-03-01
影响因子：
2.3
通讯作者：
Edwards, Brenda K.
中科院分区：
文献类型：
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作者：
Clegg, Limin X.;Reichman, Marsha E.;Edwards, Brenda K.
来自国家癌症研究所监测、流行病学和最终结果 (SEER) 计划的基于人群的癌症登记数据以医疗记录和管理信息为基础。尽管 SEER 数据已广泛用于健康差异研究，但有关种族、西班牙裔和移民身份的信息质量尚未得到系统评估。该信息的质量是通过将 SEER 数据与 SEER-国家纵向死亡率研究链接数据库中 1973 年至 2001 年间诊断的 13,538 名癌症患者的自我报告数据进行比较来确定的。种族方面的总体一致性非常好（kappa = 0.90，95% CI = 0.88-0.91），西班牙裔种族的总体一致性为中等至显着（kappa = 0.61，95% CI = 0.58-0.64），移民身份的总体一致性较低（kappa = 0.21。95% CI = 0.10, 0.23）。这些分歧的影响是，与自我识别相比，SEER 数据往往对患者数量进行了低估，但非西班牙裔群体的分类略有过高。这些分歧转化为不同种族、民族和移民身份的特定癌症统计数据，具体取决于使用的是自我报告数据还是 SEER 数据。特别是，美洲印第安人/阿拉斯加原住民基于自我分类的 5 年 Kaplan-Meier 生存率和中位生存时间（分别为 59% 和 140 个月）显着高于基于 SEER 分类（分别为 44% 和 53 个月），尽管患者数量较少。这些结果可以为研究人员考虑使用基于人群的登记数据来确定癌症负担的差异提供有用的指导。特别是，研究结果警告不要使用出生地作为美洲印第安人/阿拉斯加原住民的移民身份和种族信息的衡量标准来评估健康差异。
Population-based cancer registry data from the Surveillance, Epidemiology, and End Results (SEER) Program at the National Cancer Institute are based on medical records and administrative information. Although SEER data have been used extensively in health disparities research, the quality of information concerning race, Hispanic ethnicity, and immigrant status has not been systematically evaluated. The quality of this information was determined by comparing SEER data with self-reported data among 13,538 cancer patients diagnosed between 1973-2001 in the SEER-National Longitudinal Mortality Study linked database. The overall agreement was excellent on race (kappa = 0.90, 95% CI = 0.88-0.91), moderate to substantial on Hispanic ethnicity (kappa = 0.61, 95% CI = 0.58-0.64), and low on immigrant status (kappa = 0.21. 95% CI = 0.10, 0.23). The effect of these disagreements was that SEER data tended to under-classify patient numbers when compared to self-identifications, except for the non-Hispanic group which was slightly over-classified. These disagreements translated into varying racial-, ethnic-, and immigrant status-specific cancer statistics, depending on whether self-reported or SEER data were used. In particular, the 5-year Kaplan-Meier survival and the median survival time from all causes for American Indians/Alaska Natives were substantially higher when based on self-classification (59% and 140 months, respectively) than when based on SEER classification (44% and 53 months, respectively), although the number of patients is small. These results can serve as a useful guide to researchers contemplating the use of population-based registry data to ascertain disparities in cancer burden. In particular, the study results caution against evaluating health disparities by using birthplace as a measure of immigrant status and race information for American Indians/Alaska Natives.