Perception of risk in women with a family history of breast cancer

Evans, D. Gareth; Burnell, L. D.; Hopwood, Penelope; Howell, Anthony

doi:10.1038/bjc.1993.112

Cited by 156 publications

(93 citation statements)

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“…Their perceived vulnerability may be based on the burden of cancer in the family rather than on the hereditary nature of a faulty gene or a family history. Other studies also reported this factor as an important triggering factor in considering personal risk and vulnerability (Evans et al 1993;McAlister 2003;Rees et al 2001;Walter and Emery 2005). Individuals' perceived vulnerability to a familial condition was defined and heightened by their experience of going through the illness with their affected relatives, and/or demise of their close ones.…”

Section: Discussionmentioning

confidence: 99%

“…Previous studies have explored the process and events that influenced the development of a personal perception of risk (Evans et al 1993;Pilarski 2009;Rees et al 2001). Some studies also explored lay understanding of familial risk of cancer and found that individuals' perceived risk and/or vulnerability was based on the burden of disease, i.e.…”

Section: Literature Reviewmentioning

confidence: 99%

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Factors influencing consultation to discuss family history of cancer by asymptomatic patients in primary care

et al. 2011

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Patient self-initiated consultations to discuss family history of cancer in primary care and the factors leading to these consultations have not been investigated. Seventy-one out of 150 asymptomatic patients with a family history of cancer at the Yorkshire Cancer Genetics Service participated in this study. A semi-structured questionnaire was administered. The results show that (1) family cancer events, doctors' advice and reaching the age of cancer-affected relatives were more salient in raising awareness of the added cancer risk due to family history than media and publicity, and knowledge of the genetics services; (2) knowledge of family medical history and its clinical value is not easy to ascertain; (3) the interrelationships with other causal beliefs are of interest and could provide insights to understand the factors motivating patients to discuss family history or cancer risk; (4) the belief that 'cancer runs in the family' or is 'a family thing' may not be sufficient to heighten perceived cancer risk and motivate patients to seek medical advice; and (5) understanding of the medical concept and clinical value of family history is poor even in this group of patients who initiated the GP consultations. In conclusion, because most primary care practitioners are likely to rely on patient initiated discussion to identify individuals at an increased risk of cancer because of their family history, these findings are therefore important to help doctors and health providers understand the reasons influencing asymptomatic patients to self-refer themselves in primary care and discuss cancer risk in order to provide appropriate care.

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Section: Discussionmentioning

confidence: 99%

Section: Literature Reviewmentioning

confidence: 99%

Factors influencing consultation to discuss family history of cancer by asymptomatic patients in primary care

et al. 2011

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“…inevitable, 1 in 2... <1 in 200, very unlikely) which they believed to be a) the risk for a woman in the general population and b) their own lifetime risk of developing ovarian cancer (adapted from Evans et al, 1993Evans et al, , 1994. They were also asked to rate their personal susceptibility to developing ovarian cancer: not very/ moderately/very susceptible.…”

Section: Risk Estimatementioning

confidence: 99%

Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic

et al. 2001

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SummaryOf 230 women referred to a familial ovarian cancer clinic, 196 (85%) completed a questionnaire before they attended. The data collected included pre-counselling risk perceptions and an assessment of distress. Respondents were more likely to underestimate (44%) than overestimate (19%) their risk. Those with a family history of breast and ovarian cancer (HBOC) were particularly likely to underestimate their ovarian cancer risk. The variables assessed in this study -sociodemographic, family history, distress, anxiety proneness, coping style and beliefs about health control -explained little of the observed variation in accuracy of risk perception. On the General Health Questionnaire (GHQ-30) 30% of the sample obtained scores above the cut-off (≥ 6) recommended for screening for 'case-level' psychological distress. Women exhibiting case-level distress were more likely to overestimate their risk (OR = 2.3). On univariate analysis low internal locus of control was associated with 'case-level' distress (P = 0.008). On multiple regression the best predictors of 'caseness' were high-trait anxiety, being a graduate and inaccurate risk perception. There was no difference in the level of distress shown by women with HBOC vs. those with a history of ovarian cancer only. Implications of these findings for the counselling needs of the women are discussed. The effectiveness of the clinic in improving the accuracy of risk perceptions and relieving distress is being assessed.

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“…Women with a family history of breast/ovarian cancer tend to overestimate their risk of developing cancer (Evans et al, 1993;Watson et al, 1999) and cancer-related distress (Lerman et al, 1995) may interfere with the comprehension of individualised genetic risk information. If genetic testing is to provide benefits, it is important to ensure that those offered testing understand risk information and the advice given, so that informed choices can be made in relation to risk management.…”

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confidence: 99%

Psychosocial impact of breast/ovarian (BRCA 1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort

et al. 2004

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This multi-centre UK study assesses the impact of predictive testing for breast and ovarian cancer predisposition genes (BRCA1/2) in the clinical context. In the year following predictive testing, 261 adults (59 male) from nine UK genetics centres participated; 91 gene mutation carriers and 170 noncarriers. Self-report questionnaires were completed at baseline (pre-genetic testing) and 1, 4 and 12 months following the genetic test result. Men were assessed for general mental health (by general health questionnaire (GHQ)) and women for general mental health, cancer-related worry, intrusive and avoidant thoughts, perception of risk and risk management behaviour. Main comparisons were between female carriers and noncarriers on all measures and men and women for general mental health. Female noncarriers benefited psychologically, with significant reductions in cancer-related worry following testing (Po0.001). However, younger female carriers (o50 years) showed a rise in cancer-related worry 1 month post-testing (Po0.05). This returned to pre-testing baseline levels 12 months later, but worry remained significantly higher than noncarriers throughout (Po0.01). There were no significant differences in GHQ scores between males and females (both carriers and noncarriers) at any time point. Female carriers engaged in significantly more risk management strategies than noncarriers in the year following testing (e.g. mammograms; 92% carriers vs 30% noncarriers). In the 12 months post-testing, 28% carriers had bilateral risk-reducing mastectomy and 31% oophorectomy. Oophorectomy was confined to older (mean 41 yrs) women who already had children. However, worry about cancer was not assuaged by surgery following genetic testing, and this requires further investigation. In all, 20% of female carriers reported insurance problems. The data show persistent worry in younger female gene carriers and confirm changes in risk management consistent with carrier status. Men were not adversely affected by genetic testing in terms of their general mental health.

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Perception of risk in women with a family history of breast cancer

Cited by 156 publications

References 4 publications

Factors influencing consultation to discuss family history of cancer by asymptomatic patients in primary care

Factors influencing consultation to discuss family history of cancer by asymptomatic patients in primary care

Cancer risk perceptions and distress among women attending a familial ovarian cancer clinic

Psychosocial impact of breast/ovarian (BRCA 1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort

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