Effect on perceived control and psychological distress of genetic knowledge in women with breast cancer receiving a BRCA1/2 test result

Brédart, Anne; Kop, Jean–Luc; Pauw, Antoine de; Caron, Olivier; Fajac, Anne; Noguès, Catherine; Stoppa‐Lyonnet, Dominique; Dolbeault, Sylvie

doi:10.1016/j.breast.2016.10.024

Cited by 17 publications

(19 citation statements)

References 45 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Perhaps the direct acknowledgement and appraisal of uncertainty as a means of coping (Babrow and Kline, 2000) was missing in some pre-test counseling experienced by our participants and thus they were not psychologically prepared for atypical VUS results. Our findings echo prior research, which shows that knowledge after pre-test genetic counseling had no direct effect on psychological outcomes after counselees were notified of their genetic test results (Brédart et al 2017). The negative affect was a key motivator for seeking clarity through classification studies.…”

Section: Discussionsupporting

confidence: 77%

Experiences of patients seeking to participate in variant of uncertain significance reclassification research

et al. 2018

View full text Add to dashboard Cite

Patients' understanding of a genetic variant of unknown clinical significance (VUS) is likely to influence beliefs about risk implications, consequent medical decisions, and other actions such as involvement in research. We interviewed 26 self-selected participants with a clinically identified VUS before they enrolled into a VUS reclassification study. Semi-structured interviews addressed topics including motivation to get genetic test, experience with the VUS result, affective responses to receiving VUS, and perceived effect of VUS and reclassification on medical care. We found that family and personal history of disease were the most prevalent motivators for getting a genetic test. Participants demonstrated mixed understanding of VUS. Most expressed negative effect on learning of their VUS result and uncertainty about its impact on clinical management. Most expected reclassification efforts to benefit their family members but not themselves. Some expressed distrust of their providers following a VUS result. Participation in the VUS reclassification study appeared to be motivated by four factors for patients with VUS-negative effect about VUS, uncertainty about its impact on clinical management, concern for family members' well-being, and to advance science. Perhaps the direct acknowledgement and appraisal of uncertainty as a means of coping was missing in some pre-test counseling experienced by our participants and thus they were not psychologically prepared for atypical VUS results. The finding of VUS-induced provider distrust suggests a need for careful consideration of appropriate pre- and post-test counseling about VUS.

show abstract

Section: Discussionsupporting

confidence: 77%

Experiences of patients seeking to participate in variant of uncertain significance reclassification research

et al. 2018

View full text Add to dashboard Cite

show abstract

“…A significant increase in medical knowledge and risk perception has been reported after pregenetic testing communication via face-to-face counseling, group discussion, and written communication—for example, information booklets—that eventually helped minimize anxiety in patients after receipt of test results. 27 - 30 …”

Section: Genetic Counseling In India: Importance and Awarenessmentioning

confidence: 99%

Genetic Counseling, Testing, and Management of HBOC in India: An Expert Consensus Document from Indian Society of Medical and Pediatric Oncology

Malhotra

Kowtal

Mehra

et al. 2020

JCO Global Oncology

View full text Add to dashboard Cite

PURPOSE Hereditary breast and ovarian cancer (HBOC) syndrome is primarily characterized by mutations in the BRCA1/2 genes. There are several barriers to the implementation of genetic testing and counseling in India that may affect clinical decisions. These consensus recommendations were therefore convened as a collaborative effort to improve testing and management of HBOC in India. DESIGN Recommendations were developed by a multidisciplinary group of experts from the Indian Society of Medical and Pediatric Oncology and some invited experts on the basis of graded evidence from the literature and using a formal Delphi process to help reach consensus. PubMed and Google Scholar databases were searched to source relevant articles. RESULTS This consensus statement provides practical insight into identifying patients who should undergo genetic counseling and testing on the basis of assessments of family and ancestry and personal history of HBOC. It discusses the need and significance of genetic counselors and medical professionals who have the necessary expertise in genetic counseling and testing. Recommendations elucidate requirements of pretest counseling, including discussions on genetic variants of uncertain significance and risk reduction options. The group of experts recommended single-site mutation testing in families with a known mutation and next-generation sequencing coupled with multiplex ligation probe amplification for the detection of large genomic rearrangements for unknown mutations. Recommendations for surgical and lifestyle-related risk reduction approaches and management using poly (ADP-ribose) polymerase inhibitors are also detailed. CONCLUSION With rapid strides being made in the field of genetic testing/counseling in India, more oncologists are expected to include genetic testing/counseling as part of their clinical practice. These consensus recommendations are anticipated to help homogenize genetic testing and management of HBOC in India for improved patient care.

show abstract

“…This new approach often implies that the genetic test is performed a short time after diagnosis, without traditional pretest genetic counseling or risk assessment. While previously cancer-related distress has been thoroughly investigated in persons receiving traditional genetic counseling for hereditary cancer [7][8][9][10], less is known about the cancer-related distress in women newly affected with breast or ovarian cancer who are offered genetic testing regardless of age and family history, and who undergo genetic testing without pretest genetic counseling. In contrast to women seeking genetic counseling because of a suspicious family history of hereditary breast and ovarian cancer, the women who are tested as part of the routine diagnostic work-up in a cancer clinic may be less aware of the possibility that their cancer can have a hereditary cause, and thus be less prepared for a decision making process regarding genetic testing.…”

Section: Introductionmentioning

confidence: 99%

“…We define distress as intrusive thoughts and avoidance responses in this study. Intrusion and avoidance are often associated with post-traumatic stress disorder (PTSD), but are also studied as reactions to actual or possible threatening events without implicating the status of a PTSD-diagnosis [8,9], as in this article. Intrusion symptoms include unbidden thoughts and images both awake and during sleep, waves of overwhelming feelings of fear and repetitive behavior.…”

Section: Introductionmentioning

confidence: 99%

Cancer-related distress in unselected women with newly diagnosed breast or ovarian cancer undergoing BRCA1/2 testing without pretest genetic counseling

et al. 2018

View full text Add to dashboard Cite

Background: Genetic testing is increasing in patients newly diagnosed with cancer. This study investigated the levels, course and predictors of cancer-related distress, defined as intrusion and avoidance, in women undergoing BRCA1/2 testing without pretest genetic counseling shortly after a diagnosis of breast or ovarian cancer. Material and methods: Unselected for family history or age, 259 women with breast cancer and 50 women with ovarian cancer, underwent BRCA1/2 testing shortly after diagnosis. Cancer-related distress was measured with the Impact of Event Scale before and after genetic testing. In order to identify predictors of distress, the subscale scores were regressed on baseline predictor variables including sociodemographic and medical variables, perceived social support, and decisional conflict regarding genetic testing. Results: The mean levels of intrusion and avoidance were in the moderate range both before and after genetic testing with a statistically significant decline during follow-up. Younger age, shorter time since diagnosis, lower levels of social support, and a diagnosis of ovarian cancer predicted higher levels of both intrusion and avoidance. In addition, higher levels of decisional conflict and living with a partner predicted higher levels of intrusion. Conclusions: Women having genetic testing shortly after a diagnosis of breast or ovarian cancer had a moderate mean level of cancer-related distress, which decreased with time. Health personnel offering genetic testing to newly diagnosed women with breast or ovarian cancer should be aware of the potential predictors for increased cancer-related distress identified in this study: younger age, less perceived social support, higher levels of decisional conflict regarding genetic testing, and living with a partner.

show abstract

Effect on perceived control and psychological distress of genetic knowledge in women with breast cancer receiving a BRCA1/2 test result

Cited by 17 publications

References 45 publications

Experiences of patients seeking to participate in variant of uncertain significance reclassification research

Experiences of patients seeking to participate in variant of uncertain significance reclassification research

Genetic Counseling, Testing, and Management of HBOC in India: An Expert Consensus Document from Indian Society of Medical and Pediatric Oncology

Cancer-related distress in unselected women with newly diagnosed breast or ovarian cancer undergoing BRCA1/2 testing without pretest genetic counseling

Contact Info

Product

Resources

About