Psychological responses to BRCA1 mutation testing: Preliminary findings.

Croyle, Robert T.; Smith, Ken R.; Botkin, Jeffrey R.; Baty, Bonnie J.; Nash, Jean E.

doi:10.1037/0278-6133.16.1.63

Cited by 284 publications

(273 citation statements)

References 22 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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“…Previous research focused on individual responses (e.g., Croyle et al, 1997;Lerman et al, 1996) had noted reduced distress among individuals who tested negative, so we had expected more friendly interpersonal responses among the negative dyads. However, the overall pattern of results for negative dyads suggests a relatively neutral, less invested relationship pattern than the other groups.…”

Section: Same-results Dyadsmentioning

confidence: 96%

Interpersonal responses among sibling dyads tested for BRCA1/BRCA2 gene mutations.

Hamann

Smith

et al. 2008

Health Psychology

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Objective-The familial context plays an important role in psychosocial responses to genetic testing. The purpose of this study was to compare sibling pairs with different combinations of BRCA1/BRCA2 test results on measures of affect, interpersonal responses, and physiological reactions.Design-Forty-nine sibling dyads with different combinations of BRCA1/BRCA2 test results (i.e., mixed, positive, negative) completed a questionnaire, and 35 of the dyads also participated in a laboratory-based discussion of genetic testing.Main Outcome Measures-The primary outcome variables included participant reports of supportive actions toward their sibling, state anger and anxiety, perceptions of sibling behavior, and electrodermal responses.Results-Compared to positive and negative dyads, mixed pairs reported less friendly general support actions, noted more anger, and perceived their sibling to be less friendly and more dominant during the interactions. In comparisons between same-result (i.e., positive, negative) pairs, positive dyads reported more dominant support behaviors and perceived their sibling to be friendlier during the interactions.

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“…53 Other studies have not reported any change in psychological risk with positive test results. 32,33,40,[57][58][59][60][61][62] Nonetheless, women who test positive for BRCA1/BRCA2 are also often met with resistance, shock, and other negative emotions from family members. [63][64][65][66] Similarly studies of individuals undergoing HNPCC testing demonstrate that the individual experiences of both unaffected and affected carriers are varied, but the majority experience an overall decrease in anxiety and depression.…”

Section: Impact Of Genetic Test Resultsmentioning

confidence: 99%

“…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%

“…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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Psychological responses to BRCA1 mutation testing: Preliminary findings.

Cited by 284 publications

References 22 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

Interpersonal responses among sibling dyads tested for BRCA1/BRCA2 gene mutations.

Psychiatric implications of cancer genetic testing

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