Agreement between self-reported breast cancer treatment and medical records in a population-based Breast Cancer Family Registry.

University of Otago, Taieri, Otago, New Zealand
Journal of Clinical Oncology (Impact Factor: 17.88). 08/2005; 23(21):4679-86. DOI: 10.1200/JCO.2005.03.002
Source: PubMed

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

  • [Show abstract] [Hide abstract]
    ABSTRACT: Rates of adherence and persistence with endocrine therapy regimens (i.e., tamoxifen, aromatase inhibitors) by breast cancer survivors are suboptimal, with negative implications for prognosis. This study identified potential contributors to nonadherence and nonpersistence. From an online breast cancer research registry (Army of Women) including approximately 51,000 breast cancer survivors, we recruited 1,371 women who currently were taking endocrine therapy and 94 nonpersisters (i.e., diagnosed during the prior 5 years and on endocrine therapy within the prior 12 months, but no longer taking it). Participants completed an online questionnaire assessing demographic/medical characteristics, general and cancer-related psychosocial variables (i.e., depressive symptoms, anxiety, patient-oncologist relationship quality, cancer recurrence worry, general symptoms), and endocrine therapy-specific variables (i.e., endocrine therapy-related symptoms, perceived endocrine therapy necessity, long-term therapy use concern, endocrine therapy-related emotions). Two weeks later, current users were re-contacted to complete an endocrine therapy adherence measure. In a final regression model, patient-reported nonadherence among current users was significantly associated with lower financial status, a prior switch in endocrine therapies, a poorer relationship with the oncologist, and lower perceived need for and more negative emotions regarding endocrine therapy (adjusted R (2) = 0.15, P < 0.001). In a final logistic regression model, endocrine therapy nonpersisters were significantly more likely than current users to report depressive symptoms, as well as more negative emotions and lower positive emotions related to endocrine therapy (adjusted R (2) = 0.10, P < 0.001). In addition to demographic/medical variables, several potentially modifiable psychosocial characteristics are likely to contribute to endocrine therapy nonadherence and nonpersistence.
    Breast Cancer Research and Treatment 04/2014; DOI:10.1007/s10549-014-2961-3 · 4.20 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: BACKGROUND Understanding tumor characteristics is likely important, but little is known about breast cancer patients' knowledge of their own disease. The authors assessed women's knowledge about their tumor characteristics, whether racial/ethnic disparities in knowledge exist, and whether education and health literacy influence associations.METHODSA population-based cohort of women in Northern California with stage 0 through III breast cancers diagnosed from 2010 to 2011 (participation rate 68.5%) was surveyed. Among 500 respondents (222 non-Hispanic white women, 142 non-Hispanic black women, and 136 Hispanic women), racial/ethnic differences in knowledge about tumor characteristics (estrogen receptor [ER] status, human epidermal growth factor receptor 2 [HER2] status, stage, grade) and correctness of tumor information (with California Cancer Registry data for confirmation) were examined. Multivariate logistic regression was used to assess the probability of: 1) knowing tumor stage, receptor status, and grade; and 2) correctly answering questions about tumor information by race/ethnicity. The impact of education and health literacy on findings was examined in sequential models.RESULTSOverall, 32% to 82% of women reported knowing each of the 4 tumor characteristics of interest, and 20% to 58% correctly reported these characteristics. After adjustment, black and Hispanic women were less likely than white women to know and have correct responses for stage, ER status, and HER2 status (all P<.05). Education and health literacy were significantly associated with knowing and having correct information about some characteristics, but these variables did not eliminate most of the racial/ethnic differences observed.CONCLUSIONS Patient's knowledge about their own breast cancer was generally poor, particularly for minority women. Further study of how this knowledge may impact receipt of care and outcomes is warranted. Cancer 2015. © 2015 American Cancer Society.
    Cancer 01/2015; 121(5). DOI:10.1002/cncr.28977 · 4.90 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Chronic inflammation is associated with increased risk of multiple cancers, including breast cancer. Adipose tissues produce proinflammatory cytokines, and obesity is a risk factor for postmenopausal breast cancer. We evaluated the association of regular use of nonsteroidal anti-inflammatory drugs (NSAIDs) with breast cancer risk, overall and by body mass index (BMI) and tumor subtypes defined by estrogen receptor, progesterone receptor, and human epidermal growth factor receptor 2 status. We conducted a population-based, case-control study involving 5,078 women aged 25-75 years who were recruited primarily from the Nashville metropolitan area of Tennessee. Multivariate unconditional logistic regression models were used to estimate odds ratios and 95 % confidence intervals for breast cancer risk after adjusting for multiple potential confounding factors. Regular use of any NSAID was associated with significantly reduced breast cancer risk (OR 0.78; 95 % CI 0.69-0.89). This association was observed for regular use of baby aspirin only (OR 0.82, 95 % CI 0.69-0.99), other NSAIDs only (OR 0.81, 95 % CI 0.69-0.95), and both baby aspirin and other NSAIDs (OR 0.52, 95 % CI 0.40-0.69). These significant inverse associations were found among overweight women (BMI ≥25 kg/m(2)) overall and by subtypes of breast cancer, but not among women with BMI <25 kg/m(2) (P for interaction = 0.023). Regular use of NSAIDs was inversely associated with breast cancer risk, particularly among overweight women. Overweight women may benefit more from the protective effects of NSAID use than normal-weight women.
    Breast Cancer Research and Treatment 07/2014; 146(2). DOI:10.1007/s10549-014-3030-7 · 4.20 Impact Factor