Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science

Crotser, Cheryl B.; Boehmke, Marcia

doi:10.1007/s11764-008-0077-7

Cited by 25 publications

(26 citation statements)

References 44 publications

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“…Women with a new diagnosis of breast cancer must integrate knowledge of their BRCA status into their surgical treatment decisions (Mai, Lagos, Palomares, & Weitzel, 2008; Schwartz et al, 2004; Weitzel et al, 2003). Women with a past diagnosis of breast cancer may face survivorship issues that may also influence their decision-making, such as menopause, infertility, fear of recurrence, and family distress (Crotser & Boehmke, 2009; Ferrell, Grant, Funk, Otis-Green, & Garcia, 1997). Knowledge of one’s BRCA+ status adds additional burden related to worry about a possible future primary cancer.…”

Section: Introductionmentioning

confidence: 99%

Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

Culver

MacDonald

Thornton

et al. 2011

Journal of Genetic Counseling

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BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA’s decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.

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Section: Introductionmentioning

confidence: 99%

Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

Culver

MacDonald

Thornton

et al. 2011

Journal of Genetic Counseling

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“…Similar post-GCRA information and psychosocial support needs were described in a review of studies reporting ongoing concerns among women with a BRCA mutation[32]. …”

Section: Discussionmentioning

confidence: 83%

Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment

et al. 2012

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Objective A patient/family-centered conference was conducted at an underserved community hospital to address Latinas’ post-genetic cancer risk assessment (GCRA) medical information and psychosocial support needs, and determine the utility of the action research format. Methods Latinas seen for GCRA were recruited to a half-day conference conducted in Spanish. Content was partly determined from follow-up survey feedback. Written surveys, interactive discussions, and Audience Response System (ARS) queries facilitated the participant-healthcare professional action research process. Analyses included descriptive statistics and thematic analysis. Results The 71 attendees (41 patients and 27 relatives/friends) were primarily non-U.S. born Spanish-speaking females, mean age 43 years. Among patients, 73% had a breast cancer history; 85% had BRCA testing (49% BRCA+). Nearly all (96%) attendees completed the conference surveys and ARS queries; ≥48% participated in interactive discussions. Most (95%) agreed that the format met their personal interests and expectations and provided useful information and resources. Gaps/challenges identified in the GCRA process included pre-consult anxiety, uncertainty about reason for referral and expected outcomes, and psychosocial needs post-GCRA, such as absorbing and disseminating risk information to relatives and concurrently coping with a recent cancer diagnosis. Conclusions The combined action research and educational conference format was innovative and effective for responding to continued patient information needs and addressing an important data gap about support needs of Latina patients and family members following genetic cancer risk assessment. Findings informed GCRA process improvements and provide a basis for theory-driven cancer control research.

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“…The risk of ovarian cancer is slightly higher for BRCA1 than for BRCA2, of 40% and of 25%, respectively [27].…”

Section: The Role Of Genetics In Hocmentioning

confidence: 95%

“…Colorectal cancer in BRCA1 mutation carriers (relative risk of 4), prostate cancer in both BRCA1 and BRCA2 mutation carriers (relative risk, 3). Other types of tumors are mainly related to BRCA2 mutation: male breast cancer, melanoma, laryngeal, and pancreatic tumors [27,28].…”

Section: The Role Of Genetics In Hocmentioning

confidence: 99%

Hereditary ovarian cancers: from BRCA mutations to clinical management. A modern appraisal

Tinelli

Malvasi

Leo

et al. 2010

Cancer Metastasis Rev

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In the past few years, ovarian cancer research has focused increasingly on disease prevention; but an increasing number of women refer to gynecology and clinical genetics clinics with a family history of ovarian cancer and inherited familial mutations. The interest on the issue has increased also due to the identification of BReast CAncer1 (BRCA1) and BRCA2 genes mutations. The importance of recognizing the characteristics of hereditary ovarian cancer (HOC) and manage women at risk appropriately will provide more accurate care of the high-risk population. Women at risk can be identified by pedigree analysis and may receive counseling from interdisciplinary cancer genetics clinics, while those at high risk need to receive genetic testing. Risk calculation programs define risks and assist in decision-making in clinical options and genetic testing; they provide information on the risks of the disease, mutation status, and the use of genetic testing in the management of high-risk families. Furthermore, while a large number of surrogate preliminary markers have been identified, there are still limited studies on ovarian cancer genomics. Different options for risk management of HOC are available: surveillance, chemoprevention and prophylactic surgery. Surveillance in HOC high-risk patients is still not accurate. Chemoprevention is currently a controversial topic, because a number of major issues still need to be addressed in developing and testing agents for ovarian cancer chemoprevention. Prophylactic surgery has been shown to effectively decrease cancer risk, and it has the possibility to substantially reduce ovarian cancer mortality.

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Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science

Cited by 25 publications

References 44 publications

Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment

Hereditary ovarian cancers: from BRCA mutations to clinical management. A modern appraisal

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