Psychological impact of genetic testing in women from high-risk breast cancer families

Meiser, Bettina; Butow, Phyllis; Friedlander, Michael; Barratt, Alexandra; Schnieden, Vivienne; Watson, Maggie; Brown, Johnny E.; Tucker, Kathy

doi:10.1016/s0959-8049(02)00264-2

Cited by 122 publications

(129 citation statements)

References 17 publications

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“…Distress has been shown to return to pre-test levels a year after genetic testing in this clinical UK cohort . However, in a smaller Australian cohort distress remained elevated among carriers a year following testing (Meiser et al, 2002). Non-carriers on the other hand are consistently reported to experience reduced levels of cancer worry following testing, which is maintained at 1 year (Meiser et al, 2002;Watson et al, 2004).…”

Section: Psychological Distressmentioning

confidence: 87%

“…Research has focused on psychological distress experienced by women following predictive BRCA1/2 testing (Lodder et al, 2001a;Meiser et al, 2002;Schwartz et al, 2002;van Oostrom et al, 2003). There is evidence of short-term (a few months following the test result) adverse effects on emotional well-being with female carriers experiencing an increase in cancer worry (Meiser et al, 2002;Watson et al, 2004).…”

Section: Psychological Distressmentioning

confidence: 99%

“…There is evidence of short-term (a few months following the test result) adverse effects on emotional well-being with female carriers experiencing an increase in cancer worry (Meiser et al, 2002;Watson et al, 2004). Women not expecting to be a carrier (Schwartz et al, 2002) or experiencing high levels of distress before genetic testing (Lodder et al, 2001a) are most vulnerable to distress later.…”

Section: Psychological Distressmentioning

confidence: 99%

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Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up

Foster

Watson

Eeles³

et al. 2007

Br J Cancer

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This prospective multicentre study assesses long-term impact of genetic testing for breast/ovarian cancer predisposition in a clinical cohort. Areas evaluated include risk management, distress and insurance problems 3 years post-testing. Participants are adults unaffected with cancer from families with a known BRCA1/2 mutation. One hundred and ninety-three out of 285 (70% response) participants at nine UK clinical genetics centres completed assessments at 3 years: 80% female; 37% carriers of a BRCA1/2 mutation. In the 3 years, post-genetic testing carriers reported more risk management activities than non-carriers. Fifty-five per cent of female carriers opted for risk reducing surgery; 43% oophorectomy; and 34% mastectomy. Eighty-nine per cent had mammograms compared with 47% non-carriers. Thirty-six per cent non-carriers X50 years did not have a mammogram post-test. Twenty-two per cent male carriers had colorectal and 44% prostate screening compared with 5 and 19% non-carriers respectively. Seven per cent carriers and 1% non-carriers developed cancer. Distress levels did not differ in carriers and non-carriers at 3-year follow-up. Forty per cent of female carriers reported difficulties with life and/or health insurance. Given the return to pre-test levels of concern among female non-carriers at 3 years and a substantial minority not engaging in recommended screening, there appears to be a need to help some women understand the meaning of their genetic status. A BRCA1 or BRCA2 gene mutation is associated with increased risk of breast and/or ovarian cancer (Miki et al, 1994;Wooster et al, 1995). This presents a number of challenges for the medical community, patients and their families. Female carriers of BRCA1/ 2 mutations (hereafter referred to as female carriers) are at substantially increased risk of developing breast and/or ovarian cancer (Ford et al, 1998). Male carriers of BRCA1/2 mutations (hereafter referred to as male carriers) have an increased risk of prostate (substantial for BRCA2) and bowel cancer (Ford et al, 1994). Male carriers of BRCA2 mutations are at risk of developing breast cancer (Easton et al, 1997). Genetic testing is becoming more widely available and evaluation of the long-term psychological impact and risk management strategies used are required. There are few reports on long-term consequences of BRCA1/2 testing beyond 1 year and most research focuses on women. This is the first paper to report uptake of risk management options, psychological distress and insurance problems in a large UK clinical cohort of men and women 3 years following predictive testing for BRCA1/2 mutations. Risk managementIndividuals at increased cancer risk are usually offered regular screening for early detection and/or risk reducing surgery. In the year following genetic testing, female carriers receive more cancer screening and risk-reducing surgery relative to pre-test levels and non-carriers . In our UK cohort, 28% of carriers had bilateral risk reducing mastectomy (BRRM) and 31% oophorectomy (BRRO) in the...

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Section: Psychological Distressmentioning

confidence: 87%

Section: Psychological Distressmentioning

confidence: 99%

Section: Psychological Distressmentioning

confidence: 99%

See 1 more Smart Citation

Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up

Foster

Watson

Eeles³

et al. 2007

Br J Cancer

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“…One meta-analysis (Braithwaite et al, 2004) concluded that there are no adverse psychosocial sequelae to genetic counselling, but the longterm impact of genetic testing has not been reviewed due to insufficient studies. Only one study has described the psychological impact of testing over the following year, and this was in a small clinical cohort and cancer worry was not assessed (Meiser et al, 2002). Data suggest that noncarriers derive psychological benefits from genetic testing, such as a reduction in worries about developing cancer.…”

mentioning

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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“…However, there is little empiric evidence of genetic testing programs leading to serious adverse effects, although this is in the context of rigorous test preparation and short-to medium-term follow-up. [11][12][13] To date most testing has been performed for highly penetrant single gene disorders such as Huntington's disease or dominantly inherited cancers. It has also occurred in the context of family testing.…”

mentioning

confidence: 99%

Comparison of genotypic and phenotypic strategies for population screening in hemochromatosis: Assessment of anxiety, depression, and perception of health

Patch

Roderick

Rosenberg

2005

Genetics in Medicine

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Purpose: Hemochromatosis is a treatable disorder with a major genetic predisposition. It provides an example in which genotypic and phenotypic strategies for screening may be compared. We previously showed noninferiority of uptake of a genotypic population screening strategy for hemochromatosis compared with a phenotypic strategy. In this article we present the psychologic effects of each strategy. Methods: A sample of 3000 individuals from primary care were randomly allocated to a phenotypic or genotypic screening strategy for hemochromatosis, and the 939 individuals who accepted screening provide the sample for this article. Standardized assessments of anxiety, general health, and depression were made at invitation, testing, result-giving, and 6 months. Results:Screening did not lead to significant changes in the self-rated assessments of anxiety, depression, and general health over time, and there were no significant differences between the two screening strategies. The unemployed or permanently disabled had lower ratings of health and higher anxiety and depression. Conclusion: The two screening strategies appeared to cause little adverse psychologic disturbance in the short term, and there was no difference between the two strategies This study provides some empiric data to support arguments against "genetic exceptionalism" and suggests that genetic testing when used for population screening for a treatable disease has few adverse effects. Genet Med 2005:7(8):550-556.

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Psychological impact of genetic testing in women from high-risk breast cancer families

Cited by 122 publications

References 17 publications

Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up

Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up

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

Comparison of genotypic and phenotypic strategies for population screening in hemochromatosis: Assessment of anxiety, depression, and perception of health

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