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. 2013 Oct;37(5):601-5.
doi: 10.1016/j.canep.2013.05.010. Epub 2013 Jun 27.

Agreement of self-reported hormone receptor status with cancer registry data in young breast cancer patients

Anne Marie McCarthy  1 , Erin McGuire, Mirar Bristol, Tracey Fredricks, Susan M Domchek, Katrina Armstrong
Affiliations

Agreement of self-reported hormone receptor status with cancer registry data in young breast cancer patients

Anne Marie McCarthy et al. Cancer Epidemiol. 2013 Oct.

Abstract

Background: Though breast cancer subtype is a key determinant of treatment choice and prognosis, few studies have assessed breast cancer patients' knowledge of estrogen and progesterone receptor (ER/PR) status.

Methods: Women diagnosed with invasive breast cancer at age 18-64 years in 2007 were recruited from the Pennsylvania Cancer Registry, and mailed a questionnaire that asked respondents to identify their ER/PR status. There were 2191 respondents included in the analysis. Agreement between self-report and cancer registry ER/PR status was assessed using kappa statistic. Logistic regression was used to assess the association of demographic, socioeconomic, and tumor factors with inaccurate self-report of ER/PR status.

Results: Fifty-nine percent of respondents reported ER/PR positive status, 15% reported ER/PR negative status, 17% responded 'don't know', and 9% did not respond. Overall, there was 69% agreement between self-report and cancer registry data, and fair agreement as measured by kappa (0.36). After excluding women who did not know or did not report their ER/PR status, there was 93% agreement, and substantial agreement as measured by kappa (0.76). Women who were older, non-white, less educated, lower income, and had ER/PR negative disease were significantly more likely to inaccurately report their ER/PR status.

Conclusions: Though a significant proportion of women do not know their hormone receptor status, women who reported their ER/PR status were accurate. Our results suggest room for improvement in patient knowledge of tumor subtypes, but also that self-reported ER/PR status may be a useful surrogate when medical record or cancer registry data is unavailable.

Keywords: Agreement; Breast cancer; Cancer registry; ER; Estrogen receptor; PCR; PR; Pennsylvania Cancer Registry; Progesterone receptor; Self-report; Tumor subtype; estrogen receptor; progesterone receptor.

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Conflict of interest statement

Conflict of Interest Statement: The authors have no conflicts of interest to report.

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