Agreement between self-reported and register-based cardiovascular events among Danish breast cancer survivors

Rikke Langballe, Esther M John, Kathleen E Malone, Leslie Bernstein, Julia A Knight, Charles F Lynch, Rebecca M Howell, Roy Shore, Meghan Woods, Patrick Concannon, Jonine L Bernstein, Lene Mellemkjær

Publikation: Bidrag til tidsskriftTidsskriftsartikelForskningpeer review


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.

TidsskriftJournal of Cancer Survivorship
Udgave nummer1
Sider (fra-til)95-100
Antal sider6
StatusUdgivet - 1 feb. 2018
Udgivet eksterntJa


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