Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List

Clarke, Lisa; Rull, Rudolph P.; Ayanian, John Z.; Boer, R. de; Deapen, Dennis; West, Dee W.; Kahn, Katherine L.

doi:10.1097/mlr.0b013e3182a30350

Cited by 9 publications

(6 citation statements)

References 28 publications

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“…We obtained birthdate and sex from the IH data warehouse. Hispanic ethnicity was determined using the ethnicity classification stored in UPDB and matching participant surnames to the 1990 Census Heavily Hispanic Surname list [12,13]. Participants with hyphenated names were matched based on either last name.…”

Section: Methodsmentioning

confidence: 99%

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Conditional survival of pediatric, adolescent, and young adult soft tissue sarcoma and bone tumor patients

Dietz

Smits-Seemann

et al. 2017

Cancer Epidemiology

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Section: Methodsmentioning

confidence: 99%

“…Participants with hyphenated names were matched based on either last name. If a participant was Hispanic according to either source, we classified the participant as Hispanic [12].…”

Section: Methodsmentioning

confidence: 99%

Conditional survival of pediatric, adolescent, and young adult soft tissue sarcoma and bone tumor patients

Dietz

Smits-Seemann

et al. 2017

Cancer Epidemiology

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“…Several studies have investigated the use of algorithms to improve the completeness of ethnicity data by assigning ethnicity codes to individuals on the basis of their names, when self-identified data is missing [ 24 , 30 , 35 , 40 , 46 , 50 , 55 , 70 ]. The utility of this approach is recognised to differ considerably across countries because of significant variations in the composition of the population.…”

Section: Resultsmentioning

confidence: 99%

A Scoping Review of Approaches to Improving Quality of Data Relating to Health Inequalities

Moorthie

Peacey

Evans

et al. 2022

IJERPH

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Identifying and monitoring of health inequalities requires good-quality data. The aim of this work is to systematically review the evidence base on approaches taken within the healthcare context to improve the quality of data for the identification and monitoring of health inequalities and describe the evidence base on the effectiveness of such approaches or recommendations. Peer-reviewed scientific journal publications, as well as grey literature, were included in this review if they described approaches and/or made recommendations to improve data quality relating to the identification and monitoring of health inequalities. A thematic analysis was undertaken of included papers to identify themes, and a narrative synthesis approach was used to summarise findings. Fifty-seven papers were included describing a variety of approaches. These approaches were grouped under four themes: policy and legislation, wider actions that enable implementation of policies, data collection instruments and systems, and methodological approaches. Our findings indicate that a variety of mechanisms can be used to improve the quality of data on health inequalities at different stages (prior to, during, and after data collection). These findings can inform us of actions that can be taken by those working in local health and care services on approaches to improving the quality of data on health inequalities.

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“…Fifth, the analysis was able to account for only area-level SES; future studies using individual-level SES could provide more insight into the odds of developing advanced-stage cancer. Sixth, SEER data on race and ethnicity are coded using their underlying cancer registry, which has a history of misclassifications of race and ethnicity compared with the criterion standard of self-report . Future efforts to improve the accuracy of the information we collect, especially regarding race and ethnicity, is critical for successful health equity research …”

Section: Discussionmentioning

confidence: 99%

Mediation of Racial and Ethnic Inequities in the Diagnosis of Advanced-Stage Cervical Cancer by Insurance Status

et al. 2023

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ImportanceBlack and Hispanic or Latina women are more likely than White women to receive a diagnosis of and to die of cervical cancer. Health insurance coverage is associated with diagnosis at an earlier stage of cervical cancer.ObjectiveTo evaluate the extent to which racial and ethnic differences in the diagnosis of advanced-stage cervical cancer are mediated by insurance status.Design, Setting, and ParticipantsThis retrospective, cross-sectional population-based study used data from the Surveillance, Epidemiology, and End Results (SEER) program on an analytic cohort of 23 942 women aged 21 to 64 years who received a diagnosis of cervical cancer between January 1, 2007, and December 31, 2016. Statistical analysis was performed from February 24, 2022, to January 18, 2023.ExposuresHealth inusurance status (private or Medicare insurance vs Medicaid or uninsured).Main Outcomes and MeasuresThe primary outcome was a diagnosis of advanced-stage cervical cancer (regional or distant stage). Mediation analyses were performed to assess the proportion of observed racial and ethnic differences in the stage at diagnosis that were mediated by health insurance status.ResultsA total of 23 942 women (median age at diagnosis, 45 years [IQR, 37-54 years]; 12.9% were Black, 24.5% were Hispanic or Latina, and 52.9% were White) were included in the study. A total of 59.4% of the cohort had private or Medicare insurance. Compared with White women, patients of all other racial and ethnic groups had a lower proportion with a diagnosis of early-stage cervical cancer (localized) (American Indian or Alaska Native, 48.7%; Asian or Pacific Islander, 49.9%; Black, 41.7%; Hispanic or Latina, 51.6%; and White, 53.3%). A larger proportion of women with private or Medicare insurance compared with women with Medicaid or uninsured received a diagnosis of an early-stage cancer (57.8% [8082 of 13 964] vs 41.1% [3916 of 9528]). In models adjusting for age, year of diagnosis, histologic type, area-level socioeconomic status, and insurance status, Black women had higher odds of receiving a diagnosis of advanced-stage cervical cancer compared with White women (odds ratio, 1.18 [95% CI, 1.08-1.29]). Health insurance was associated with mediation of more than half (ranging from 51.3% [95% CI, 51.0%-51.6%] for Black women to 55.1% [95% CI, 53.9%-56.3%] for Hispanic or Latina women) the racial and ethnic inequities in the diagnosis of advanced-stage cervical cancer across all racial and ethnic minority groups compared with White women.Conclusions and RelevanceThis cross-sectional study of SEER data suggests that insurance status was a substantial mediator of racial and ethnic inequities in advanced-stage cervical cancer diagnoses. Expanding access to care and improving the quality of services rendered for uninsured patients and those covered by Medicaid may mitigate the known inequities in cervical cancer diagnosis and related outcomes.

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Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List

Cited by 9 publications

References 28 publications

Conditional survival of pediatric, adolescent, and young adult soft tissue sarcoma and bone tumor patients

Conditional survival of pediatric, adolescent, and young adult soft tissue sarcoma and bone tumor patients

A Scoping Review of Approaches to Improving Quality of Data Relating to Health Inequalities

Mediation of Racial and Ethnic Inequities in the Diagnosis of Advanced-Stage Cervical Cancer by Insurance Status

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