Family communication matters: The impact of telling relatives about unclassified variants and uninformative DNA-test results

Vos, Joël; Jansen, Anne M.L.; Menko, Fred H.; Asperen, Christi J. van; Stiggelbout, Anne M.; Tibben, Aad

doi:10.1097/gim.0b013e318204cfed

Cited by 34 publications

(30 citation statements)

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“…Rather than enhancing the content of the information given, genetic counseling strategies that assess personal and familial barriers to communication may provide more targeted support and may facilitate more open sharing within the family. In line with other studies showing the importance of the extent of the communication process on the impact genetic testing information has on relatives [44], our next paper will examine those factors which are associated with actual understanding of the test results by the informed relatives.…”

Section: Discussionmentioning

confidence: 89%

Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial

et al. 2013

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Background This study reports a randomized clinical trial evaluating the efficacy of an intervention to prepare individuals to communicate BRCA1/BRCA2 results to family members. Methods Women aged 18 years and older, who had genetic testing, and who had adult first-degree relatives (FDRs), were randomly assigned to a communication skills-building intervention or a wellness control session. Primary outcomes were the percentage of probands sharing test results, and the level of distress associated with sharing. The ability of the Theory of Planned Behavior variables to predict the outcomes was explored. Results Four hundred twenty-two women were enrolled in the study, 219 (intervention) and 203 (control). Data from 137 in the intervention group and 112 in the control group were analyzed. Two hundred forty-nine probands shared test results with 838 relatives (80.1%). There were no significant differences between study groups in the primary outcomes. Combining data from both arms revealed that perceived control and specific social influence were associated with sharing. Probands were more likely to share genetic test results with their children, female relatives and relatives who they perceived had a favorable opinion about learning the results. Conclusion The communication skills intervention did not impact sharing of test results. The proband’s perception of her relative’s opinion of genetic testing and her sense of control in relaying this information influenced sharing. Communication of test results is selective, with male relatives and parents less likely to be informed. Impact Prevalent psychosocial factors play a role in the communication of genetic test results within families.

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Section: Discussionmentioning

confidence: 89%

Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial

et al. 2013

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“…The mean number of information statements communicated to patients was 21 (range [16][17][18][19][20][21][22][23][24][25][26].…”

Section: Participantsmentioning

confidence: 99%

“…More recently, a Dutch study found that patients' recall of information about BRCA1/2 genetic test results was similar to the information provided during genetic counselling, but there were few similarities between the information actually communicated to the patient and the information recalled by their relatives. 17 The authors concluded that the information was reinterpreted at each stage of the information transfer, highlighting problems with the accuracy of information communicated to relatives by patients.…”

Section: Introductionmentioning

confidence: 99%

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

et al. 2014

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This observational study aimed to (i) compare the accuracy of information recalled by patients and relatives following genetic counselling about a newly identified BRCA1/2 mutation, (ii) identify differences in accuracy of information about genetics and hereditary cancer and (iii) investigate whether accuracy among relatives improved when information was provided directly by genetics health professionals. Semistructured interviews following results from consultations with 10 breast/ovarian cancer patients and 22 relatives were audio-recorded and transcribed. Information provided by the genetics health professional was tracked through the families and coded for accuracy. Accuracy was analysed using the Wilcoxon Signed-Ranks test. Sources of information were tested using Spearman's rank-order correlation coefficient. Fifty-three percent of the information recalled by patients was accurate. Accuracy of recall among relatives was significantly lower than that among patients (P ¼ 0.017). Both groups recalled a lower proportion of information about hereditary cancer than about genetics (P ¼ 0.005). Relatives who learnt the information from the patient alone recalled significantly less accurate information than those informed directly by genetics health professionals (P ¼ 0.001). Following genetic counselling about a BRCA1/2 mutation, accuracy of recall was low among patients and relatives, particularly about hereditary cancer. Multiple sources of information, including direct contact with genetics health professionals, may improve the accuracy of information among relatives. INTRODUCTIONOne of the goals of genetic counselling in the context of familial cancer risk is to provide relevant information in order to enable informed decision-making about genetic testing and risk management. 1 Until recently, genetic testing has generally been offered to women with breast or ovarian cancer after completing cancer treatment. However, BRCA1/2 testing is increasingly offered to women with newly diagnosed breast cancer as part of their oncology management. 2 Thus, the information that the patient understands and recalls about a cancer-predisposing gene mutation may have an impact on treatment decisions as well as on the management of future cancer risks for herself and her relatives. 3,4 Responsibility for sharing information within families once a cancer-predisposing gene mutation has been identified generally falls on the individual with cancer who receives the initial mutation result. 5 Families prefer information to be passed on by the patient; 6 yet, although most families do appear to communicate genetic information, 5 patients do not always share all information with all at-risk relatives. 7,8 There are many barriers to family communication about hereditary cancer, 9 including lack of a close relationship, 6 reluctance to upset relatives, 10 youth or emotional readiness of relatives, 11 family culture, 8 perception of the risks and benefits of the information 12 and personal beliefs about the causes of genetic illness. 13...

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“…These quality of life and survivorship issues in conjunction with the difficulty some patients may have to accurately recall their test results 149–151 underscore the importance of pre- and posttest genetic counseling that is provided by a knowledgeable genetics professional. In addition to expertise in cancer risk assessment and medical management of individuals with hereditary cancer predisposition, these individuals are also trained to identify potential psychosocial and educational needs of patients.…”

Section: Quality Of Life and Survivorshipmentioning

confidence: 99%

Genetic Risk Assessments in Individuals at High Risk for Inherited Breast Cancer in the Breast Oncology Care Setting

Pal

Vadaparampil

2012

Cancer Control

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Background It has become increasingly common to consider BRCA mutation status when determining optimal cancer risk management and treatment options in order to improve patient outcomes. Knowledge about the risk for hereditary cancer at or as close as possible to the time of diagnosis allows patients access to the most risk reduction options available. Methods This paper illustrates the role of genetic risk assessment for hereditary breast cancer, using hereditary breast and ovarian cancer (HBOC) syndrome as a model due to germline mutations in the BRCA1 and BRCA2. Specifically, the value of genetic counseling and testing for HBOC across the cancer prevention and control continuum is outlined as it pertains to breast cancer. Results In recognition of the importance of risk assessment for hereditary breast cancer, leading health professional organizations have developed specific guidelines and recommendations to providers for identification of women at increased risk for carrying a BRCA mutation. Conclusions Institutional efforts specific to genetic counseling and testing have resulted in the implementation of a model driven by physician recommendation as a referral system for high-risk breast cancer patients. Establishing an infrastructure to support research, education, and outreach initiatives focused on BRCA genetic counseling and testing will provide information that can improve the delivery of cancer genetics services.

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Family communication matters: The impact of telling relatives about unclassified variants and uninformative DNA-test results

Cited by 34 publications

References 38 publications

Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial

Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

Genetic Risk Assessments in Individuals at High Risk for Inherited Breast Cancer in the Breast Oncology Care Setting

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