Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators

Hopwood, Penelope; Keeling, F; Long, Alison; Pool, C C; Evans, D. Gareth; Howell, Anthony

doi:10.1002/(sici)1099-1611(1998090)7:5<402::aid-pon317>3.0.co;2-x

Cited by 107 publications

(54 citation statements)

References 25 publications

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“…A cutoff score of X5 is recommended by the test authors as being clinically significant, that is a score X5 indicates psychiatric disorder. However, Hopwood et al (1998) recommend X10 (binary scoring) as the cutoff for women with familial cancer risk to reduce overestimation of cases and this was used in the present study. Symptoms were assessed in male and female participants.…”

Section: Methodsmentioning

confidence: 99%

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: Methodsmentioning

confidence: 99%

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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“…Studies have demonstrated that approximately 6% to 24% of individuals undergoing genetic testing for a BRCA1/BRCA2-associated or HNPCC-associated mutations report clinically elevated distress levels. [4][5][6][7][8] Studies of genetic testing in LiFraumeni syndrome report similar distress levels. 9,10 FAP studies have identified significantly higher percentages of individuals experiencing distress and anxiety, [11][12][13][14] whereas studies of genetic testing for p16-Leiden in familial melanoma and pancreatic cancer have not demonstrated elevated distress levels.…”

Section: Introductionmentioning

confidence: 90%

Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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As genetic testing for hereditary cancer syndromes has transitioned from research to clinical settings, research regarding its accompanying psychosocial effects has grown. Men and women being tested for hereditary cancer syndromes may experience some psychological distress while going through the process of testing or after carrier status is identified. Psychological distress appears to decrease over the course of the first year and it is typically not clinically significant. Longer term studies show mixed results with some mutation carriers continuing to experience elevated distress. Baseline distress is the greatest risk factor for both immediate (weeks-12 months) and long-term psychological distress (18 mo-8 years post genetic testing). In addition to baseline psychological distress, other risk factors can be identified to help identify individuals who may need psychosocial interventions during the genetic testing process. The challenges of providing clinical care to the growing population of individuals identified to be at increased risk for heritable cancers present opportunities for research and new models of care. Cancer 2015;121:341-60. V C 2014 American Cancer Society.KEYWORDS: BRCA1, BRCA2, HNPCC, Lynch syndrome, genetic testing, unaffected carrier, carrier, hereditary cancer syndrome, riskreducing surgeries, psychosocial. INTRODUCTIONSeveral familial cancer syndromes that confer a high lifetime risk of cancer can be identified with genetic testing, and greater numbers of men and women will consider testing as the availability and public awareness of genetic testing for cancer susceptibility continue to increase. Research to date suggests that these individuals will have varied emotional responses to the process of genetic testing as well as its results.When genetic testing for cancer syndromes first transitioned from research protocols to clinics, there was initial concern that it would be similar to genetic testing for Huntington disease. Many worried that knowing they are at high risk for cancer in the future may be too distressing for some individuals, possibly even leading to suicide. However, several systematic reviews focusing primarily on hereditary breast and ovarian cancer (HBOC) and Lynch syndrome, also known as hereditary nonpolyposis colon cancer (HNPCC), have demonstrated that most individuals who have a mutation identified in an associated gene cope well with the knowledge of their genetic status. 1-3 Data regarding psychological implications of the genetic testing process are the most robust for women who present for HBOC risk assessment, which involves discussion of the BRCA1 and BRCA2 genes, although there are increasing studies for HNPCC, familial adenomatous polyposis (FAP), and other hereditary cancer syndromes.Although the rates of distress in individuals undergoing genetic testing vary, they appear to be relatively small. Studies have demonstrated that approximately 6% to 24% of individuals undergoing genetic testing for a BRCA1/BRCA2-associated or HNPCC-associated mutations repo...

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“…General health questionnaire 28 (GHQ28) (Goldberg and Hillier, 1979): this 28-item measure screens for psychiatric disorder (cases) in nonpsychiatric populations (clinical case cutoff score of X10 (binary scoring) was used (Hopwood et al, 1998)). Male and female participants were assessed at baseline and follow-up.…”

Section: Methodsmentioning

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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Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators

Cited by 107 publications

References 25 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

Psychiatric implications of cancer genetic testing

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

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