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.
Keywords: Breast; Cancer; Endocrine; Pharmacy; Registry.
© 2022. The Author(s), under exclusive licence to Springer Nature Switzerland AG.