Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study

Oostrom, Iris van; Meijers-Heijboer, Hanne; Lodder, Litanja; Duivenvoorden, Hugo J.; Gool, Arthur R. Van; Seynaeve, Caroline; Meer, Conny A. van der; Klijn, Jan G.M.; Geel, Bert N. van; Burger, Curt W.; Wladimiroff, J. W.; Tibben, Aad

doi:10.1200/jco.2003.10.100

Cited by 260 publications

(256 citation statements)

References 45 publications

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“…91 Another study of BRCA1/BRCA2 carriers with breast cancer reported greater perceived stress 5 years after testing. 90 A slight increase in distress also was observed in a 7-year follow-up study of BRCA1/BRCA2 carriers compared with noncarriers. 93 To date, there are limited long-term studies available for Lynch syndrome.…”

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 79%

“…Initial long-term studies for BRCA1/BRCA2 focused on individuals without cancer and reported no differences in psychosocial outcomes between carriers and noncarriers at 3 years 89 or 5 years after testing. 90 The 5-year study included carriers, most of whom (91%) had undergone prophylactic surgery, which may have confounded the results. 90 However, another study of women who were at risk for hereditary breast cancer but who had not undergone prophylactic risk-reducing surgeries reported distress levels that were lower or similar to their baseline levels 5 to 8 years later 51 ; and all long-term distress was predicted by corresponding baseline levels of intrusion, avoidance, anxiety, and depression.…”

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 99%

“…90 The 5-year study included carriers, most of whom (91%) had undergone prophylactic surgery, which may have confounded the results. 90 However, another study of women who were at risk for hereditary breast cancer but who had not undergone prophylactic risk-reducing surgeries reported distress levels that were lower or similar to their baseline levels 5 to 8 years later 51 ; and all long-term distress was predicted by corresponding baseline levels of intrusion, avoidance, anxiety, and depression. 51 Similar to the Meiser review, 34 those data also supported the use of baseline screening to identify risk factors for future distress, including current high distress levels, the presence of unresolved grief, passive coping styles, higher breast cancer risk perception, and greater frequency of breast selfexamination.…”

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

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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Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 79%

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 99%

Section: Long-term Psychiatric/psychological Impact Of Testingmentioning

confidence: 99%

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Psychiatric implications of cancer genetic testing

Hirschberg

Chan‐Smutko

Pirl

2014

Cancer

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“…Although the revealed additional risk of pancreatic cancer elicited worries, most counselees persisted in genetic testing. In addition, general distress levels were low for both test acceptors and decliners compared with those reported after the first counseling session of other, treatable, hereditary types of cancer [22][23][24][25][26] and lower even than distress levels of the general population [27] when measured with the same distress questionnaires. The melanoma screening program may have had a reassuring effect given the high proportion of eligible individuals at risk that take part in the PLC.…”

Section: Discussionmentioning

confidence: 99%

Genetic testing in familial melanoma: uptake and implications

et al. 2008

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Objective: We report on the uptake and psychological impact of p16-Leiden genetic testing to contribute to a greater understanding of counseling melanoma families.Methods: Within a defined research setting, genetic counseling and testing were offered to members of p16-Leiden-positive melanoma pedigrees, at risk of carrying a gene defect associated with an increased risk of melanoma and pancreatic cancer.Results: One hundred and eighty-four individuals sought counseling, of which 141 (77%) opted for genetic testing. Uptake of genetic counseling and testing, and psychological motivation was evaluated in 94 (57%) individuals. Higher pre-test risk of carrying the mutation and older age proved significantly predictive for counseling uptake. Age was predictive for test acceptance, whereas fearful test expectancies predicted test decline. Counselees had lower distress levels than those reported in other oncogenetic testing settings.Conclusion: We are the first to report on genetic testing for familial melanoma. Following the first counseling session, we found a relatively high uptake rate for p16-Leiden testing and no clinically worrisome levels of distress.

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“…[6][7][8] In general, no major long-term adverse psychological consequences seem to result from the genetic testing process with the exception of a consistently present subgroup of individuals who report distress. 7,9,10 Although what causes psychological difficulties for this subgroup is still unclear, it has been proposed that psychological adaptation should be analyzed not only at the individual perspective level but also in the context of the family interrelationships. 11 Presently, family members carry responsibility for notifying relatives about the presence of cancer-predisposing mutation.…”

Section: Introductionmentioning

confidence: 99%

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

Lapointe

Bouchard

Patenaude

et al. 2012

Genetics in Medicine

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Purpose:Little is known about the long-term impact of BRCA1/2 testing on the relationships between family members. We assessed the incidence of positive and negative family relationship effects of BRCA1/2 testing in the 3 years after result disclosure and identified predictors of these effects. methods:A total of 485 women and 67 men who had undergone BRCA1/2 testing were asked 3 years later whether having been tested had improved and/or disrupted relationships with their relatives. The associations with sociodemographic, medical, and psychosocial characteristics were assessed.Results: Globally, 85.1% did not report any positive or negative effects of genetic testing on family relationships. Positive and negative effects were reported by 13.2% and 3.7% of participants, respectively. Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects. conclusion: Our findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing. Understanding that most family relationships are unchanged long term by genetic testing may help genetic service providers encourage those considering testing to overcome hesitancy related to potential difficulties of communicating results to relatives.Genet Med 2012:14(1):60-68

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Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study

Cited by 260 publications

References 45 publications

Psychiatric implications of cancer genetic testing

Psychiatric implications of cancer genetic testing

Genetic testing in familial melanoma: uptake and implications

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

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