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Accuracy of tumor registry versus pharmacy dispensings for breast cancer adjuvant endocrine therapy

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Abstract

Purpose

Accounting for endocrine therapy use for breast cancer treatment is important for studies of survivorship. We evaluated the accuracy of Surveillance, Epidemiology, and End Results (SEER) breast cancer endocrine therapy data compared with pharmacy dispensings from an integrated health system.

Methods

We included women with non-metastatic hormone receptor positive primary breast cancer diagnosed between 1995 and 2017 enrolled in Kaiser Permanente Washington, linking their data with SEER. We used pharmacy dispensings for endocrine therapy within one year following diagnosis as our reference standard. We calculated kappa (concordance), positive predictive value (PPV), and negative predictive values (NPV) overall and stratified by woman and tumor characteristics of interest.

Results

Of 5,055 women, mean age at diagnosis was 62 years (interquartile range = 53–71); 53% had localized stage, 56% received lumpectomy with radiation, and 31% received chemotherapy. SEER data alone identified 67% of women as having received endocrine therapy; this increased to 75% with pharmacy dispensings. SEER’s concordance with pharmacy dispensings was 0.68 (PPV = 91%; NPV = 76%). PPV did not vary by tumor or women characteristics; however, NPV declined with younger age at diagnosis (64% in < 45 years vs. 86% in 75+ years), increasing tumor stage (49% in regional stage vs. 91% in DCIS), and chemotherapy treatment (41% in those with chemotherapy vs. 83% in those without chemotherapy).

Conclusion

Pharmacy dispensings enable more complete endocrine therapy capture, particularly in women with more advanced tumors or who receive chemotherapy. We determined woman, tumor, and treatment characteristics that contribute to underascertainment of endocrine therapy use in tumor registries.

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Data availability

Individual-level data is unavailable under Institutional Review Board constraints. Aggregate and summary-level can be made available upon request and approval.

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Acknowledgments

There are no acknowledgements pertaining to this manuscript.

Prior presentations

This work has been previously published in part at the 2021 Health Care Systems Research Network Annual Conference as a poster during the virtual meeting [35].

Funding

Research in this publication was supported by the National Cancer Institute of the National Institutes of Health Award Number T32 CA094880 (“Cancer Prevention Training: Epidemiology, Nutrition, Genetics & Survivorship”). This work was supported by the Intramural Research Program of the Division of Cancer Epidemiology and Genetics of the US National Cancer Institute. Data collection was supported by grants from the National Institutes of Health (Grant Nos. 1R01CA120562, P01CA154292, and R50CA211115 [to EJAB]) and contracts from the National Cancer Institute (Contract Numbers HHSN 261201700564P, HHSN75N91019P00076, HHSN 5N91020P00327). Cancer data used in this study was supported by the Cancer Surveillance System of the Fred Hutchinson Cancer Research Center, which is funded by Contract No. N01-CN-67009 and N01-PC-35142 from the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute with additional support from the Fred Hutchinson Cancer Research Center and the State of Washington.

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Contributions

CBH was reasonable for formal analysis, investigation, methodology, software, validation, visualization, writing the original draft and editing revisions to the manuscript. EJAB and DSMB were reasonable for conceptualization, data curation, funding acquisition, investigation, methodology, project administration, resources, supervision, ad reviewing and editing of the manuscript. JML and JS contributed to investigation, methodology, and review of the manuscript.

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Correspondence to Cameron B. Haas.

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Haas, C.B., Bowles, E.J.A., Lee, J.M. et al. Accuracy of tumor registry versus pharmacy dispensings for breast cancer adjuvant endocrine therapy. Cancer Causes Control 33, 1145–1153 (2022). https://doi.org/10.1007/s10552-022-01603-9

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