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: 18.43). 08/2005; 23(21):4679-86. DOI: 10.1200/JCO.2005.03.002
Source: PubMed


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.

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    • "Self-reported treatment questionnaires may be a more feasible option in some cases; however, few studies have examined the accuracy of self-reported breast cancer treatment and fewer have considered factors potentially influencing accuracy. To our knowledge, only four studies have specifically examined the accuracy of self-reported breast cancer treatment to date [1] [2] [3] [4]. All four studies demonstrated that breast cancer survivors can accurately recall some important information pertaining to their treatment. "
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    ABSTRACT: Obtaining complete medical record information can be challenging and expensive in breast cancer studies. The current literature is limited with respect to the accuracy of self-report and factors that may influence this. We assessed the agreement between self-reported and medical record breast cancer information among women from the Ontario site of the Breast Cancer Family Registry. Women aged 20-69 years diagnosed with incident breast cancer 1996-1998 were identified from the Ontario Cancer Registry, sampled on age and family history. We calculated kappa statistics, proportion correct, sensitivity, specificity, and positive and negative predictive values and conducted unconditional logistic regression to examine whether characteristics of the women influenced agreement. The proportions of women who correctly reported having received a broad category of therapy (hormone therapy, chemotherapy, radiation, or surgery) as well as sensitivity and specificity were above 90%, and the kappa statistics were above 0.80. The specific type of hormonal or chemotherapy was reported with low-to-moderate agreement. Aside from recurrence, no factors were consistently associated with agreement. Thus, most women were able to accurately report broad categories of treatment but not necessarily specific treatment types. The finding of this study can aid researchers in the use and design of self-administered treatment questionnaires.
    Full-text · Article · Dec 2012 · Journal of Cancer Epidemiology
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    • "to quality ratings (van Campen et al. 1995; Kravitz 1998; Turnbull & Luther 1996; Epstein et al. 2004; Takach 2011; Bickell 2999) From a research perspective, asking patients about services utilized offers a less expensive assessment approach than conducting chart reviews, particularly for care that may be fragmented and not accessible electronically. Studies find patient report to be reliable for cancer treatments received (Oberst et al. 2009; Phillips et al. 2005; Schootman et al. 2005; Penfold et al. 2011), yet the reliability of patient report to assess utilization is variable (Lubeck & Hubert 2005) with greater concerns among vulnerable patients (Sohler et al. 2009). Our study calls into question the accuracy of self-reported utilization of patient assistance services among breast cancer patients. "
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    ABSTRACT: The objective of this study was to assess factors that affect breast cancer patients' recall of patient assistance services. We surveyed newly-diagnosed breast cancer patients and compared recall of receiving patient assistance services at 2 weeks and 6 months in a patient-assistance randomized controlled trial aimed to connect women to such programs. The intervention group received information about assistance programs targeted to their practical, psychosocial, and/or informational needs; the control group received a Department of Health pamphlet about breast cancer and its treatment, including a list of patient assistance services. Of 333 women, 210 (63%) reported informational, 183 (55%) psychosocial and 177 (53%) practical needs. At 2 weeks, 96% (202/210) of women with informational needs reported receiving informational material but at 6 months, recall dropped to 69% (140/210). All women whose informational needs were met recalled receiving information, compared to 31% whose needs were unmet (p < 0.0001). Of 109 intervention patients with psychosocial or practical needs, 77% (79) contacted a program specified in their action plan at 2 weeks. However, at 6 months, only 39% (31/79) recalled contacting a program. Women without recall were less likely to report having their needs met (6% vs. 58%; p < 0.001). Recall of patient assistance services is strongly related to having needs met. Use of patient surveys to evaluate utilization or impact of such programs should be used with caution due to poor patient recall. CLINICAL TRIALS # NCT00233077:
    Full-text · Article · Oct 2012 · SpringerPlus
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    • "The abstraction of clinical information from medical reports obtained directly from the clinicians treating the patient is the most accurate means of collecting cancer data (Schootman et al, 2005). However, it can be extremely time-consuming and expensive, especially across multiple hospitals (Phillips et al, 2005). "
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    ABSTRACT: In research studies, accurate information of cancer diagnosis is crucial. In women with breast cancer (BC), we compare cancer registration (CR) in England/Wales and self-reporting with independent confirmation. In the UK Collaborative Trial of Ovarian Cancer Screening, notification of BC diagnosed between randomisation and 31 December 2009 was obtained through (1) CR (17 October 2011) and (2) self-reporting using postal-questionnaire. Breast cancer was confirmed using a detailed questionnaire (BC questionnaire BCQ) completed by the treating clinician (gold standard). Apparent sensitivity and positive-predictive value of CR/self-reporting vs BCQ were calculated. Of 1065 women with possible BC notification, diagnosis was confirmed in 932 (87.5%). A total of 3.1% (28 out of 918) of BC CR and 12.4% (128 out of 1032) of women with self-reported BC only had in-situ carcinoma on BCQ. Another 4.6% (43 out of 932) of BCQ-confirmed cancer did not have a BC registration, and 3.6% (34 out of 932) did not self-report BC. Apparent sensitivity of CR and self-reporting vs BCQ were 95.4 and 96.4%, respectively. Positive-predictive value of self-reporting (87.1%) was significantly lower than that of CR (96.8%). Women aged<65 were more likely to over report in-situ carcinoma as BC. Overall, 73 (6.8%) women would have been misclassified/missed if CR, and 167 (15.6%) if self-reporting data alone was used. This study confirms the reliability of BC registration in England/Wales and highlights the fact that 1 in 10 women self-reporting BC might only have in-situ breast carcinoma.
    Full-text · Article · May 2012 · British Journal of Cancer
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