Abstract

BackgroundDespite the high prevalence of bladder cancer, research on optimal bladder cancer care is limited. One way to advance observational research on care is to use linked data from multiple sources. Such big data research can provide real-world details of care and outcomes across a large number of patients. We assembled and validated such data including (1) administrative data from the Department of Veterans Affairs (VA), (2) Medicare claims, (3) data abstracted by tumor registrars, (4) data abstracted via chart review from the national electronic health record, and (5) full text pathology reports.MethodsBased on these combined data, we used administrative data to identify patients with newly diagnosed bladder cancer who received care in the VA. To validate these data, we first compared the diagnosis date from the administrative data to that from the tumor registry. Second, we measured accuracy of identifying bladder cancer care in VA administrative data, using a random chart review (n = 100) as gold standard. Lastly, we compared the proportion of patients who received bladder cancer care among those who did versus did not have full text bladder pathology reports available, expecting that those with reports are significantly more likely to receive care in VA.ResultsOut of 26,675 patients, 11,323 (42%) had tumor registry data available. 90% of these patients had a difference of 90 days or less between the diagnosis dates from administrative and registry data. Among 100 patients selected for chart review, 59 received bladder cancer care in VA, 58 of which were correctly identified using administrative data (sensitivity 98%, specificity 90%). Receipt of bladder cancer care was substantially more common among those who did versus did not have bladder pathology available (96% vs. 43%, p < 0.001).ConclusionMerging administrative with electronic health record and pathology data offers new possibilities to validate the use of administrative data in bladder cancer research.

Highlights

  • Despite the high prevalence of bladder cancer, research on optimal bladder cancer care is limited

  • Bladder cancer is the third and fourth most prevalent non-cutaneous cancer among men and women in the United States [1]. In spite of this high prevalence, there is fairly limited research on what entails optimal bladder cancer care [2], for the majority of patients who are living with non-muscle invasive bladder cancer (NMIBC)

  • This included (1) administrative data from the Veterans Affairs (VA) Corporate Data Warehouse (CDW), (2) Medicare claims data for the Veterans in our cohort, (3) data abstracted by tumor registrars at each individual VA facility which is deposited into the CDW, (4) full text pathology reports from the Text Integration Utility files available in the CDW, and (5) data abstracted via chart review from the national electronic health record using the Compensation and Pension Records Interchange (CAPRI) and Veterans Health Information Systems and Technology Architecture (VistA) Web tools

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Summary

Introduction

Despite the high prevalence of bladder cancer, research on optimal bladder cancer care is limited. Bladder cancer is the third and fourth most prevalent non-cutaneous cancer among men and women in the United States [1] In spite of this high prevalence, there is fairly limited research on what entails optimal bladder cancer care [2], for the majority of patients who are living with non-muscle invasive bladder cancer (NMIBC). This may be due to the fact that examining bladder cancer care using observational data often. – as done here – these combined datasets allow for the validation of algorithms and results from the administrative data

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