Accuracy of Self‐Reported Personal History of Cancer in an Outpatient Breast Center

Domı́nguez, Francisco; Lawrence, Christine; Halpern, Elkan F.; Drohan, Brian; Grinstein, Georges; Black, Dalliah M.; Smith, Barbara L.; Gadd, Michele A.; Specht, Michele; Kopans, Daniel B.; Moore, Richard H.; Hughes, Sherwood S.; Roche, Constance A.; Hughes, Kevin S.

doi:10.1007/s10897-006-9067-y

Cited by 19 publications

(15 citation statements)

References 18 publications

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“…The high consistency of the information observed for cancer status (92.59%), cancer type (85.33%) and age of onset of cancer (92.64%) in FDRs is comparable to figures reported in a few previous studies from the USA [8,35,36]. Regarding relationship to the proband, one of the most interesting results was the high consistency of the information about cancer diagnoses in mothers (95%).…”

Section: Discussionsupporting

confidence: 83%

Consistency of self-reported first-degree family history of cancer in a population-based study

et al. 2009

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The aim of this study was to assess the prevalence and consistency of self-reported family history of cancer among first-degree relatives (FDR) in a population-based study. Women at primary care units (PCU) were submitted to a questionnaire about cancer family history. Consistency of the report was determined by comparing self-reported history at the PCU to data from subsequent genetic evaluations and/or cancer confirmatory documents. Consistency in relation to degree of education, reported tumor type and reported age at cancer diagnosis in FDR was assessed. In 8,881 women interviewed, the prevalence of cancer in an FDR was 25.14% (CI 95%: 24.14; 25.94). Mean age was 40.29 years and most (70.26%) had < or = 8 years of education. There was a good agreement of self-reported cancer history at the PCU and in subsequent genetic evaluations [Kappa coefficient = 0.76 (P < 0.05)]. Inconsistencies were not related to low literacy (chi (2) = 2.027; P = 0.363). Consistency of the reported information for cancer status, cancer type and age of onset was 92.59%, 85.33% and 92.64%, respectively. The prevalence of cancer history in an FDR was similar to previous reports in other populations. Consistency and reliability of the self-reported information was high, regardless of educational level.

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Section: Discussionsupporting

confidence: 83%

Consistency of self-reported first-degree family history of cancer in a population-based study

et al. 2009

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“…Accuracy of self-reported cancer history validated against medical records and cancer registry data has been found to be high [29], with high sensitivity in cancer outpatient samples [30]. …”

Section: Discussionmentioning

confidence: 99%

Cancer patients’ willingness to answer survey questions about life expectancy

Mackenzie

Carey

Sanson‐Fisher

et al. 2012

Support Care Cancer

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PurposeThis study aimed to determine the proportion and characteristics of radiation oncology outpatients who were willing to answer questions about their life expectancy.MethodsA cross-sectional patient self-report survey was conducted using touch screen computers in Australian radiation oncology treatment centers. The primary outcome was the respondent’s willingness to complete a survey subsection about life expectancy. Demographic and disease characteristics were also collected, and level of anxiety and depression was assessed using the Hospital Anxiety and Depression Scale.ResultsOf the 469 oncology outpatients who completed the survey, 327 (70 %; 95 % CI, 65 %, 74 %) indicated that they were willing to answer questions about life expectancy. Being female (p < 0.001), older (p < 0.05), born in Asia (p < 0.05), and being diagnosed with cancer types other than breast and prostate cancer (p < 0.01) were associated with lower odds of answering life expectancy questions.ConclusionsThe opportunity to opt-out of survey questions about sensitive issues such as life expectancy is a feasible method for accessing important information about patient preferences while minimizing burden. Further research may be needed to improve acceptability of life expectancy research to some patient groups.

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“…Additionally, even though eliciting a family history is crucial, its accuracy cannot be assured. Multiple studies have shown that patient recall of their family history is often inadequate (Dominguez et al, 2007; Gaff et al, 2004; Glanz et al, 1999; King et al, 2002; Mai et al, 2011; Murff et al, 2004; Ozanne et al, 2012; Pinsky et al, 2003; Quillin et al, 2006; Weinrich et al, 2002; Wideroff et al, 2010; Ziogas & Anton-Culver, 2003) and can vary by education level (Wideroff et al, 2010), income (Weinrich et al, 2002), race (Dominguez et al, 2007; Pinsky et al, 2003; Wideroff et al, 2010), gender (Glanz et al, 1999; Pinsky et al, 2003; Wideroff et al, 2010) and cancer site of origin (King et al, 2002; Mai et al, 2011; Murff et al, 2004; Ziogas & Anton-Culver, 2003). Asking patients to report their family history before the genetic counseling session provides an opportunity for the patient to confer with relatives and gather information, allowing for more comprehensive and accurate family history collection.…”

Section: Introductionmentioning

confidence: 99%

An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline, Measure and Improve the Genetic Counseling Process

Pritzlaff

Yorczyk

Robinson

et al. 2014

Journal of Genetic Counseling

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CancerGene Connect (CGC) is a web-based program that combines the collection of family and medical history, cancer risk assessment, psychosocial assessment, report templates, a result tracking system, and a patient follow up system. The performance of CGC was assessed in several ways: pre-appointment completion data analyzed for demographic and health variables; a time study to assess overall time per case and to compare the data entry by the genetic counselor compared to the patient, and a measured quality assessment of the program via observation and interview of patients. Prior to their appointment, 52.3% of 2,414 patients completed the online patient questionnaire section of CGC. There were significant differences in completion rates among racial and ethnic groups. County hospital patients were less likely to complete the questionnaire than insured patients (p<0.0001); and likewise uninsured patients and patients with Medicare/Medicaid were less likely to complete the questionnaire than private patients (p<0.0001). The average genetic counseling time per case was 82 minutes, with no significant differences whether the counselor or the patient completed CGC. CGC reduces genetic counselor time by approximately 14%-46% compared to average time per case using traditional risk assessment and documentation methods previously reported. All surveyed users felt the questionnaire was easy to understand. CGC is an effective tool that streamlines workflow, and provides a standardized data collection tool that can be used to evaluate and improve the genetic counseling process.

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Accuracy of Self‐Reported Personal History of Cancer in an Outpatient Breast Center

Cited by 19 publications

References 18 publications

Consistency of self-reported first-degree family history of cancer in a population-based study

Consistency of self-reported first-degree family history of cancer in a population-based study

Cancer patients’ willingness to answer survey questions about life expectancy

An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline, Measure and Improve the Genetic Counseling Process

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