Abstract
Purpose
We examined the degree of over- and under-reporting of cardiovascular diseases (CVDs) among female breast cancer survivors comparing self-reports to diagnostic codes from the Danish National Patient Register (NPR).
Methods
The study comprised 357 Danish breast cancer patients from the WECARE study who completed a telephone interview concerning CVDs. Disease diagnoses for these women were obtained from the NPR. Agreement was calculated as the number of diagnoses that were both self-reported and in the NPR divided by (1) number of self-reported diagnoses (over-reporting) or (2) number of diagnoses in the NPR (under-reporting).
Results
In total, 68 women reported 96 specific cardiovascular outcomes of which 56 (58%) were found in the NPR. Ninety cardiovascular diagnoses were found in the NPR of which 56 (62%) were specifically reported at the interview. There was 80% agreement as to the occurrence of a cardiovascular diagnosis overall. Of 289 women reporting no CVD, 273 (94%) had no diagnoses in the NPR.
Conclusions
Breast cancer survivors seem to report absence of CVD accurately, but they both over-report and under-report specific cardiovascular diagnoses. Using a broader definition of CVDs improves the agreement between self-reported and NPR data.
Implications for cancer survivors
Determining how cancer treatments affect the risk of cardiovascular morbidities is essential, and the development of high-quality methods for collecting such data is critical. While self-reported data are adequate for assessing the presence of any CVD condition, medical record review will yield higher quality data on specific CVD conditions.
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Acknowledgements
We thank Alexandre Andersen, Danish Cancer Society Research Center, for data management and computer support, the women who participated in the WECARE studies, and The Women’s Environmental Cancer and Epidemiology (WECARE) Study Collaborative Group for their important contributions:
Memorial Sloan Kettering Cancer Center (Coordinating Center) Investigators and Staff: Jonine L. Bernstein Ph.D. (WECARE study P.I.); Marinela Capanu Ph.D.; Xiaolin Liang M.D.; Irene Orlow Ph.D.; Anne S. Reiner M.P.H.; Mark Robson, M.D.; Meghan Woods M.P.H.
Collaborative Site Investigators: Leslie Bernstein Ph.D.; John D. Boice Jr. Sc.D.; Jennifer Brooks Ph.D.; Patrick Concannon Ph.D.; Dave V. Conti Ph.D.; David Duggan Ph.D.; Joanne W. Elena Ph.D., M.P.H.; Robert W. Haile Dr.P.H.; Esther M. John Ph.D.; Julia A. Knight Ph.D.; Charles F. Lynch M.D., Ph.D.; Kathleen E. Malone Ph.D.; Lene Mellemkjær Ph.D.; Jørgen H. Olsen M.D. DMSc.; Daniela Seminara Ph.D. M.P.H.; Roy E. Shore Ph.D., Dr.P.H.; Marilyn Stovall Ph.D.; Daniel O. Stram Ph.D.; Marc Tischkowitz M.D., Ph.D.; Duncan C. Thomas Ph.D.
Collaborative Site Staff: Kristina Blackmore M.Sc.; Anh T. Diep; Judy Goldstein B.A.; Irene Harris B.S., C.M.D.; Rikke Langballe M.P.H.; Cecilia O’Brien; Susan Smith M.P.H.; Rita Weathers M.S.; Michele West Ph.D.
Funding
The research was supported by National Institutes of Health (grant number U01 CA83178, R01 CA97397, R01 CA129639, R01 CA114236, and P30 CA008748). The funding source had no role in the design, in the collection, analysis, or interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication.
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The authors declare that they have no conflict of interest.
Ethical approval
The WECARE study was approved by the institutional review board and the ethical committee system in Denmark. All procedures performed were in accordance with the ethical standards of the institutional and national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
Additional information
Membership in the WECARE Study Collaborative Group is provided in the Acknowledgments
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Langballe, R., John, E.M., Malone, K.E. et al. Agreement between self-reported and register-based cardiovascular events among Danish breast cancer survivors. J Cancer Surviv 12, 95–100 (2018). https://doi.org/10.1007/s11764-017-0648-6
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DOI: https://doi.org/10.1007/s11764-017-0648-6