Originally published as JCO Early Release 10.1200/JCO.2005.03.002 on April 25 2005

This Article Full Text Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Phillips, K.-A. Articles by Hopper, J. L. Search for Related Content PubMed PubMed Citation Articles by Phillips, K.-A. Articles by Hopper, J. L. Social Bookmarking                            What's this?

Agreement Between Self-Reported Breast Cancer Treatment and Medical Records in a Population-Based Breast Cancer Family Registry

From the Peter MacCallum Cancer Centre; The University of Melbourne; The Cancer Council Victoria, Victoria, Australia; Prince of Wales Hospital, NSW, Australia; Huntsman Cancer Institute, Salt Lake City, UT; University of Otago, Dunedin, New Zealand

Address reprint requests to Professor John L. Hopper, PhD, Centre for Genetic Epidemiology, University of Melbourne, Level 2, 723 Swanston St, Carlton, Victoria 3053, Australia; e-mail: j.hopper{at}unimelb.edu.au

PURPOSE: Although self-report data on treatment for breast cancer are collected in some large epidemiologic studies, their accuracy is unknown.

METHODS: As part of a population-based Breast Cancer Family Registry, questionnaires on initial breast cancer treatment and subsequent recurrence were mailed to Australian women diagnosed between 1991 and 1998. These self-report data were validated against medical records for 895 women.

RESULTS: The median recall period was 3.2 years, mean age at diagnosis was 44 years, and 81% of women had early-stage breast cancer. Agreement between the two data sources was very high for general questions about type of treatment (100%, 99%, 99%, and 94% for surgery, radiotherapy, chemotherapy, hormonal therapy, respectively). For more specific questions about details of each treatment received, agreement was: for radiation therapy, 96% and 99% for radiation to the breast and chest wall, respectively; for surgery, 83%, 97%, and 88% for lumpectomy, mastectomy, and lymph node dissection, respectively; for hormonal therapy, 94% for tamoxifen; and for chemotherapy, range between 76% and 93%. There was 97% agreement about whether there had been a recurrence, and agreement about the location of recurrence was at least 90% for all sites. Agreement regarding stage at diagnosis was 62%, with discrepancies mostly due to women with locoregional disease incorrectly reporting distant spread.

CONCLUSION: This self-report questionnaire can be used to collect accurate data on broad categories of initial breast cancer treatment and recurrence, and even for more detailed information on specifics of treatment and site of recurrence.

Supported by the National Health and Medical Research Council of Australia (No. 145604). The Australian Breast Cancer Family Study was supported by the National Health and Medical Research Council of Australia, the New South Wales Cancer Council, the Victorian Health Promotion Foundation and the United States National Cancer Institute, National Institutes of Health under RFA No. CA-95-003 as part of the Breast Cancer Family Registries (CFRs), and through cooperative agreements with the Fox Chase Cancer Center, Huntsman Cancer Institute, Columbia University, Northern California Cancer Center, Cancer Care Ontario, and The University of Melbourne.

The content of this manuscript does not necessarily reflect the views or policies of the National Cancer Institute or any of the collaborating centers in the Breast CFRs, nor does mention of trade names, commercial products, or organizations imply endorsement by the US Government or the CFRs.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

CiteULike    Complore    Connotea    Del.icio.us    Digg    Facebook    Reddit    Technorati    Twitter    What's this?

This article has been cited by other articles:

				K.-A. Phillips, R. L. Milne, D. W. West, P. J. Goodwin, G. G. Giles, E. T. Chang, J. C. Figueiredo, M. L. Friedlander, T. H.M. Keegan, G. Glendon, et al. Prediagnosis Reproductive Factors and All-Cause Mortality for Women with Breast Cancer in the Breast Cancer Family Registry Cancer Epidemiol. Biomarkers Prev., June 1, 2009; 18(6): 1792 - 1797. [Abstract] [Full Text] [PDF]

				J. L. Malin and N. L. Keating The Cost-Quality Trade-Off: Need for Data Quality Standards for Studies That Impact Clinical Practice and Health Policy J. Clin. Oncol., July 20, 2005; 23(21): 4581 - 4584. [Full Text] [PDF]