A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships

Oostrom, Iris van; Meijers-Heijboer, Hanne; Duivenvoorden, Hugo J.; Bröcker‐Vriends, A. H. J. T.; Asperen, Christi J. van; Sijmons, Rolf H.; Seynaeve, C.; Gool, Arthur R. Van; Klijn, Jan G.M.; Riedijk, Sam; Dooren, Silvia van; Tibben, Aad

doi:10.1002/pon.1062

Cited by 53 publications

(60 citation statements)

References 26 publications

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“…[20][21][22][23][24][25]27 These studies have also reported, similar to this study, more positive than negative family relationship effects. [20][21][22]24,27 Taken together, these results offer reassurance about potential family effects to individuals considering BRCA1/2 testing. The association between psychological adjustment difficulties, such as cancer distress and intolerance for uncertainty, and the more frequent reporting of positive effects of genetic testing is intriguing.…”

Section: Discussionsupporting

confidence: 89%

“…25,27 In the months following the test result disclosure, a decrease in the level of family cohesion and expressiveness have also been reported. 26,28 To the best of our knowledge, no study has yet evaluated how other sociodemographic, medical, and psychosocial characteristics are associated with the incidence of long-term effects on family relationships in the context of BRCA1/2 genetic testing.…”

Section: Introductionmentioning

confidence: 98%

“…[20][21][22][23][24][25] Only a few studies were specifically conducted to quantify the effects of the genetic testing process on family relationships. [26][27][28] Data on the incidence of long term (i.e., >1 year) of family relationship effects after the receipt of test result are still lacking.…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Discussionsupporting

confidence: 89%

Section: Introductionmentioning

confidence: 98%

See 1 more Smart Citation

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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“…Disclosing the genetic test results to at-risk family members can be a time consuming and emotionally laden process for the patient, and patients can experience feelings of guilt regarding the possibility of passing on to their children a hereditary predisposition to breast and ovarian cancer. 23 Patients faced with both of these sets of challenges simultaneously could become overwhelmed. Genetic testing could get lost in the shuffle of complicated medical care and other immediate decisions that need to be made.…”

Section: Discussionmentioning

confidence: 99%

Timing of BRCA1/BRCA2 genetic testing in women with ovarian cancer

Daniels

Urbauer

Stanley

et al. 2009

Genetics in Medicine

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Purpose: To determine when, in reference to the course of their treatment, women with ovarian cancer are seen for genetic counseling, as well as to determine what factors influence this timing. Methods: Single institution retrospective chart review of patients with ovarian cancer who underwent BRCA1/BRCA2 genetic testing. Results: Thirtythree percent of our sample (n ϭ 100) were seen for genetic counseling after ovarian cancer recurrence. In four cases, genetic test results were disclosed to next of kin. Thirty percent of women seen for genetic counseling after recurrence received their initial treatment elsewhere. Women with a history of breast cancer were significantly more likely to be seen for genetic counseling at an earlier phase of their treatment than women with no history of breast cancer. Conclusion: We found that one third of patients with ovarian cancer who underwent genetic testing were seen for initial genetic counseling after disease recurrence. In some cases, genetic counseling took place during the end of life care, with genetic test results disclosed to next of kin. Given the poor prognosis of women with recurrent ovarian cancer, we advocate providing genetic counseling at the time of initial ovarian cancer treatment both in comprehensive cancer centers and in community oncology settings. [2][3][4] In addition, a small percentage of ovarian cancers are attributable to other hereditary cancer syndromes such as hereditary nonpolyposis colorectal cancer syndrome (Lynch syndrome). Genetic evaluation for Lynch syndrome should be considered for patients with ovarian cancer who have a suggestive personal and/or family history of colon, endometrial, or other Lynch-associated cancers. In contrast, a smaller percentage of breast, colorectal, and endometrial cancers are attributable to a hereditary predisposition; approximately 5% of breast cancers are attributable to BRCA1 or BRCA2, 5 and approximately 2% of colorectal and endometrial cancers are attributable to Lynch syndrome. 6 -8 BRCA1/BRCA2 genetic testing of women with ovarian cancer has significant implications for both the patients with ovarian cancer and for family members. For the patient, a positive genetic test result indicates an increased risk for primary breast cancer, which may be particularly significant for patients with ovarian cancer who were diagnosed at an early stage and/or are long-term survivors. A growing body of evidence also indicates that patients with ovarian cancer with BRCA mutations have improved survival when compared with patients with sporadic ovarian cancers. 9 -13 For family members, the information gained from genetic testing of their relative with ovarian cancer is of utmost importance. Once a BRCA1/BRCA2 mutation has been identified in a woman with ovarian cancer, her siblings, children, and other family members can be offered accurate predictive genetic testing for the known mutation. In the context of a known familial mutation, both positive and negative predictive genetic test results are interpretable and...

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“…Evidence strongly suggests that reciprocal social support, compared to one-way provision or receipt of support, are especially important on the well-being of older adults (Heaney and Israel 2008;House et al 1988). Previous studies showed that social support exchanges among family members were associated with communication of disease risks within the family (Hughes et al 2002;Koehly et al 2009;van Oostrom et al 2007a). Thus, it is possible that the extent to which reciprocal social support exchange occurs within family systems determines older adults' desire and ability to share FHH information with family members.…”

Section: Sharing Family Health History (Fhh) Informationmentioning

confidence: 99%

Family health information sharing among older adults: reaching more family members

Ashida

Schafer

2014

J Community Genet

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Although family health history (FHH) information has tremendous potential in the prevention of common complex diseases such as heart disease and cancer, lack of knowledge about one's own FHH among the public hinders its utility. Older individuals often desire to contribute to the well-being of younger generations and also play critical roles in disseminating this information. This study evaluated psychosocial factors associated with the extent of FHH communication within families. Older adults (N = 110) were interviewed at three senior centers in an urban community. Multivariate Poisson regression analysis showed that respondents who received FHH from a parent reported 41 % more family members with whom they shared FHH (b=0.34, p < 0.001) controlling for the family network size. Furthermore, one unit increase in the number of family members with whom respondents exchange reciprocal emotional support (b=0.04, p<0.01), perceived familiarity with own FHH (b=0.14, p=0.01), and self-efficacy to share FHH (b= 0.18, p=0.02) were associated with 4, 15, and 20 % increases in the number of family members with whom respondents shared FHH, respectively. Future efforts may inform older adults about their important role in modeling FHH communication behavior to encourage information sharing in future generations while providing information about how to collect and disseminate FHH to increase their familiarity and ability to share FHH within the family.

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A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships

Cited by 53 publications

References 26 publications

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

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

Timing of BRCA1/BRCA2 genetic testing in women with ovarian cancer

Family health information sharing among older adults: reaching more family members

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