What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing.

Lerman, Caryn; Hughes, Chanita; Lemon, Stephen J.; Main, David; Snyder, Carrie; Durham, Carolyn; Narod, Steven A.; Lynch, Henry T.

doi:10.1200/jco.1998.16.5.1650

Cited by 234 publications

(167 citation statements)

References 13 publications

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“…Previous studies on genetic testing for a BRCA1/2 mutation did not find substantial psychological morbidity among women initiating genetic testing or receiving a positive test result (Lerman et al, 1996(Lerman et al, , 1998Croyle et al, 1997;Lodder et al, 1999Lodder et al, , 2001Coyne et al, 2000;Schwartz et al, 2002), which is in agreement with the well-being levels in our study. The DA had no negative impact on a broad range of well-being outcomes, and did not deter women from receiving their test result, while it improved understanding of the treatment options and consequences.…”

Section: Discussionsupporting

confidence: 92%

Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation

Roosmalen¹,

Stalmeier²,

Verhoef³

et al. 2004

Br J Cancer

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The aim of the study was to evaluate the impact of a decision aid (DA) and its timing in women being tested for a BRCA1/2 mutation. Women with and without a previous history of cancer were included after blood sampling for genetic testing. The DA consisted of a brochure and video providing information on screening and prophylactic surgery. To evaluate the impact of the DA, women were randomised to the DA group (n ¼ 184), receiving the DA 2 weeks after blood sampling, or to the control group (n ¼ 184). To evaluate the impact of timing, mutation carriers who had received the DA before the test result (n ¼ 47) were compared to mutation carriers who received the DA after the test result (n ¼ 42). Data were collected on well-being, treatment choice, decision and information related outcomes. The impact of the DA was measured 4 weeks after blood sampling. The impact of timing was measured 2 weeks after a positive test result. The DA had no impact on well-being. Regarding decision related outcomes, the DA group more frequently considered prophylactic surgery (P ¼ 0.02) corroborated with higher valuations (P ¼ 0.04). No differences were found for the other decision related outcomes. Regarding information related outcomes, the DA group felt better informed (P ¼ 0.00), was more satisfied with the information (P ¼ 0.00), and showed more accurate risk perceptions. Timing of the DA had no effect on any of the outcomes. No interactions were found between the DA and history of cancer. In conclusion, women being tested for a BRCA1/2 mutation benefit from the DA on information related outcomes. Because timing had no effect, the DA is considered useful either before or after the test result.

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Section: Discussionsupporting

confidence: 92%

Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation

Roosmalen¹,

Stalmeier²,

Verhoef³

et al. 2004

Br J Cancer

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“…The most robust predictor of future distress is distress at baseline. 32,49,[57][58][59]68,[74][75][76][77] Additional risk factors include prior psychiatric history of depression, 74 history of using psychotropic medications, 75 passive or avoidant coping styles, 51,75,[80][81][82] or inaccurate risk perception, [85][86][87] which put individuals at risk of experiencing distress throughout the process or many years after receiving their results. Other important risk factors for future distress include being the first member of the family to obtain genetic testing, 33 having children, 76 experiencing the death of a relative from hereditary cancer, 34,78 as well as experiencing unresolved loss 5 and complicated grief.…”

Section: Discussionmentioning

confidence: 99%

“…In 1 study, individuals who deferred HBOC testing had high baseline rates of depression (26%), which increased to 47% 1 month later and persisted at 6-month follow-up. 49 Depressive symptoms also are associated with reduced rates of HNPCC test uptake. 50 In a 2013 review of individuals who presented for predictive BRCA1/2 testing, individuals who were depressed were less likely to present for cancer genetic testing; and, if they were tested, then they were less likely to participate in follow-up (Table 1).…”

Section: Psychiatric Predictors Of Genetic Testingmentioning

confidence: 99%

“…A psychiatric history of major or minor depression, 74 a history of psychopharmacologic medication use, 75 higher pretest anxiety, and higher levels of distress at the time of testing also increase the risk for anxiety or distress after receiving genetic testing results. 32,49,[57][58][59]68,[75][76][77] Studies also suggest that both women with children and the first family member to pursue testing are more likely to be distressed. 33,76 Another important risk factor for psychological distress during cancer genetic susceptibility testing for both BRCA1/BRCA2 and HNPCC is whether or not the individual undergoing testing has experienced the loss of a relative to a hereditary cancer, especially for individuals who had a parent die when they were children.…”

Section: Risk Factors For Distressmentioning

confidence: 99%

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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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“…Despite a burgeoning literature upon the psychosocial impact of familial cancer and accessing genetic services upon patients (Audrain et al, 1998;Lerman et al, 1998;Brain et al, 2000;Clarke et al, 2001;Geer et al, 2001;Rees et al, 2001;Fry et al, 2003), full and partial economic evaluations of cancer genetic services are sparse (Griffith et al, 2004). In this paper, we present the first full micro costing of a commonly used cancer genetic counselling and testing protocol used in the UK with patients at increased risk of developing breast, ovarian, breast and ovarian (breast ovarian) or colorectal cancer.…”

mentioning

confidence: 99%

A micro costing of NHS cancer genetic services

et al. 2004

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This paper presents the first full micro costing of a commonly used cancer genetic counselling and testing protocol used in the UK. Costs were estimated for the Cardiff clinic of the Cancer Genetics Service in Wales by issuing a questionnaire to all staff, conducting an audit of clinic rooms and equipment and obtaining gross unit costs from the finance department. A total of 22 distinct event pathways were identified for patients at risk of developing breast, ovarian, breast and ovarian or colorectal cancer. The mean cost per patient were d97 -d151 for patients at moderate risk, d975 -d3072 for patients at high risk of developing colorectal cancer and d675 -d2909 for patients at high risk of developing breast or ovarian cancer. The most expensive element of cancer genetic services was labour. Labour costs were dependent upon the amount of labour, staff grade, number of counsellors used and the proportion of staff time devoted to indirect patient contact. With the growing demand for cancer genetic services and the growing number of national and regional cancer genetic centers, there is a need for the different protocols being used to be thoroughly evaluated in terms of costs and outcomes.

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What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing.

Cited by 234 publications

References 13 publications

Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation

Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation

Psychiatric implications of cancer genetic testing

A micro costing of NHS cancer genetic services

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