Decision-making surrounding genetic testing among women with ovarian carcinoma

Holman, Laura L.; Chen, A.; Zhao, Daniel; Dockery, Lauren; Rezende, Lisa F.; Friedman, Sue

doi:10.1016/j.ygyno.2017.03.108

Cited by 2 publications

(2 citation statements)

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“…The 33-question survey is a modified version of a similar survey that was previously used to collect data from ovarian cancer survivors about decision making regarding testing for BRCA1 and/or BRCA2 (BRCA1/2) and other cancer susceptibility genes. 15 The survey gathered data about each respondent's cancer history, prior knowledge of hereditary breast cancer and genetic mutations, recollection of what was told to her by clinician(s) about hereditary cancer and genetic testing, factors that contributed to her decision regarding genetic testing, genetic testing results, and satisfaction with her decision regarding genetic testing. The survey is included in the Data Supplement (online only).…”

Section: Methodsmentioning

confidence: 99%

Decision Making About Genetic Testing Among Women With a Personal and Family History of Breast Cancer

Scott

Friedman

Telli

et al. 2020

JCO Oncology Practice

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PURPOSE: To understand genetic testing use and decision making among patients with high genetic risk. MATERIALS AND METHODS: A survey of breast cancer survivors was administered online by a hereditary cancer nonprofit organization, Facing Our Risk of Cancer Empowered, from October 2017 to March 2018. RESULTS: Of 1,322 respondents, 46% had breast cancer at age < 45 years, 61% had a first-degree relative with cancer, and 84% underwent genetic testing, of whom 56% had a risk-associated pathogenic variant. Most (86%; 95% CI, 84% to 88%) tested respondents were very satisfied with their testing decision, versus 34% (95% CI, 27% to 41%) of untested respondents. Factors that encouraged testing included relatives’ cancer risk (75%; 95% CI, 73% to 78%), clinicians’ recommendations (68%; 95% CI, 66% to 71%), and potential treatment implications (67%; 95% CI, 64% to 69%). Factors that discouraged testing included insurance concerns (14%; 95% CI, 12% to 16%), cost (14%; 95% CI, 12% to 16%), and discrimination (9%; 95% CI, 7% to 11%). Thirty-nine percent (95% CI, 36% to 41%) recalled hearing from a clinician that genetic discrimination is illegal. Respondents often recalled clinicians informing them about inheritance patterns (65%; 95% CI, 62% to 67%), surgical implications (65%; 95% CI, 63% to 68%), and other cancer risks (66%; 95% CI, 63% to 68%) but less often that results could have potential implications for clinical trial eligibility (38%; 95% CI, 36% to 42%) or targeted therapies (14%; 95% CI, 12% to 16%). Patients who had genetic counseling were twice as likely to recall clinicians informing them about all queried topics. Results did not vary by diagnosis year. CONCLUSION: Among patients with high genetic risk, clinicians’ recommendations, potential treatment implications, and protections against discrimination were motivating factors to undergo genetic testing, but fewer than half recalled clinicians providing all this information, and this did not improve over time. Clinicians influence testing decisions and should inform patients about legal protections and treatment implications.

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Section: Methodsmentioning

confidence: 99%

Decision Making About Genetic Testing Among Women With a Personal and Family History of Breast Cancer

Scott

Friedman

Telli

et al. 2020

JCO Oncology Practice

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“…Insurance coverage was also not a significant consideration in patients’ decision to undergo testing . In a retrospective study of an online survey of 1282 women with a personal history of OC referred for BRCAmut testing, the strongest factors that affected their testing decisions were concern for family members (89.6%), healthcare provider recommendations (76.3%) and concern about the risk of other cancers (72.6%), suggesting that most patients are concerned about the well‐being of their family members in relation to their own diagnosed condition.…”

Section: Discussionmentioning

confidence: 99%

BRCA mutation testing for ovarian cancer in the context of available targeted therapy: Survey and consensus of Hong Kong specialists

Kwong

Cheng

Hsue³

et al. 2019

Asia-Pac J Clncl Oncology

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Aims BRCA mutation (BRCAmut) testing is an important tool for the risk assessment, prevention and early diagnosis of breast cancer (BC) and ovarian cancer (OC), and more recently, for determining patient susceptibility to targeted therapy. This study assessed the current BRCAmut testing patterns and explored physicians’ perspectives on the utilities and optimal sequencing of the testing, in order to facilitate and standardize testing practices. Methods Medical specialists in BC and OC in Hong Kong were invited to complete a questionnaire on BRCAmut testing practices. A panel of specialists with extensive BRCAmut testing experience was also convened to develop consensus statements on testing, using the Delphi method and an anonymous electronic voting system. Results The survey respondents (n = 71) recognized family history (FH) of BC and/or OC and an early age of onset as key factors for referring BRCAmut testing. The proportion of respondents who would test all OCs regardless of FH or age, as per the recent international guideline, was low (28.2%). The largest hurdles to testing were the cost, as well as the availability of next‐generation sequencing‐accredited testing and genetic counseling facilities. The panelists suggested that the sequence of somatic testing followed by germline testing may help address both the imminent need of treatment planning and longer term hereditary implications. The potential emotional and financial burdens of BRCAmut testing should be weighed against the potential therapeutic benefits, and the type and timing of testing personalized. Conclusions Accessibility of BRCAmut testing to all at‐risk individuals will be achievable through improvements in testing affordability, as well as widened availability of accredited testing and genetic counseling facilities.

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Decision-making surrounding genetic testing among women with ovarian carcinoma

Cited by 2 publications

References 0 publications

Decision Making About Genetic Testing Among Women With a Personal and Family History of Breast Cancer

Decision Making About Genetic Testing Among Women With a Personal and Family History of Breast Cancer

BRCA mutation testing for ovarian cancer in the context of available targeted therapy: Survey and consensus of Hong Kong specialists

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