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ICARE Publication January 2021

Qualitative Methods for Refining a Web-Based Educational Tool for Patients Focused on Inherited Cancer Predisposition

Abstract To address the increasing demand for inherited cancer genetic testing, we developed and evaluated a web-based educational tool to streamline genetic counseling (GC). Consented patients viewed the initial prototype containing core content (Version 1-Core) and provided feedback through three open-ended survey questions. Additional data were collected through individual interviews from a subgroup who viewed …

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Permanent link to this article: https://inheritedcancer.net/pub10521_2/

ICARE Publication January 2021

Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers

Abstract Objective: This study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM). Methods: Semi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in a BRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers …

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Permanent link to this article: https://inheritedcancer.net/pub10521/

ICARE Publication December 2020

Contribution of Germline Predisposition Gene Mutations to Breast Cancer Risk in African American Women

Abstract Background: The risks of breast cancer in African American (AA) women associated with inherited mutations in breast cancer predisposition genes are not well defined. Thus, whether multigene germline hereditary cancer testing panels are applicable to this population is unknown. We assessed associations between mutations in panel-based genes and breast cancer risk in 5054 AA women …

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Permanent link to this article: https://inheritedcancer.net/pub121420/

ICARE Publication November 2020

Family communication of genetic test results among women with inherited breast cancer genes

Abstract Identification of inherited breast cancer may guide care. These benefits can be amplified through communication of genetic test results with at-risk family members and subsequent family testing (FT). Females with a pathogenic/likely pathogenic (P/LP) variant in BRCA1/2, PALB2, CHEK2, and/or ATM were surveyed about family communication (FC) of genetic test results and FT. Comparisons …

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Permanent link to this article: https://inheritedcancer.net/pub111020/

ICARE Publication September 2020

Breastfeeding and the risk of epithelial ovarian cancer among women with a BRCA1 or BRCA2 mutation

Abstract Objective: BRCA mutation carriers face a high lifetime risk of developing ovarian cancer. The strong inverse association between breastfeeding and the risk of ovarian cancer is established in the general population but is less well studied among women with a germline BRCA1 or BRCA2 mutation. Method: Thus, we conducted a matched case-control analysis to …

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Permanent link to this article: https://inheritedcancer.net/pub93020/

ICARE Publication September 2020

Strategies to enhance identification of hereditary breast cancer gene carriers

No abstract available Reid S, et al. Strategies to enhance identification of hereditary breast cancer gene carriers. Expert Rev Mol Diagn. 2020 Sep; 20(9):861-865. Epub 2020 Sep 11. PMID: 32856489. 

Permanent link to this article: https://inheritedcancer.net/pub91120/

ICARE Publication July 2020

Update on multi-gene panel testing and communication of genetic test results

Abstract With technological advances, multi-gene panel testing has become increasingly used to identify patients at risk for hereditary breast cancer (HBC). There are currently evidence-based interventions and breast cancer screening strategies that exist for cancer prevention and early detection among patients with HBC. Moreover, in addition to the personal impact of identifying HBC, this information …

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Permanent link to this article: https://inheritedcancer.net/pub70820/

ICARE Publication July 2020

A Web-Based Tool to Automate Portions of Pretest Genetic Counseling for Inherited Cancer

Abstract Background: Increasing demand for genetic testing for inherited cancer risk coupled with a shortage of providers trained in genetics highlight the potential for automated tools embedded in the clinic process to meet this demand. We developed and tested a scalable, easy-to-use, 12-minute web-based educational tool that included standard pretest genetic counseling elements related to …

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Permanent link to this article: https://inheritedcancer.net/pub70120/

ICARE Publication May 2020

Cancer risk management among female BRCA1/2, PALB2, CHEK2, and ATM carriers

Abstract Purpose: Identification of inherited breast cancer may guide cancer risk management. We sought to compare risk management practices across women with inherited breast cancer genes. Methods: Females with a pathogenic/likely pathogenic (P/LP) variant in BRCA1/2, PALB2, CHEK2, and/or ATM were surveyed about cancer risk management. Comparisons were made across genes. Results: The 235 participants with P/LP variants …

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Permanent link to this article: https://inheritedcancer.net/pub52220/

ICARE Publication May 2020

Patterns and covariates of benefit finding in young Black breast cancer survivors: A longitudinal, observational study

Abstract Objective: To examine the patterns and covariates of benefit finding over time among young Black breast cancer (BC) survivors. Methods: Black women (N = 305) with invasive BC diagnosed ≤50 years were recruited an average of 1.9 years post-BC diagnosis. Participants completed self-report questionnaires of benefit finding, social support, and illness intrusions at three …

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Permanent link to this article: https://inheritedcancer.net/pub51120/

ICARE Publication April 2020

Acceptability and outcomes of multigene panel testing among young Black breast cancer survivors

No abstract available Conley C, et al. Acceptability and outcomes of multigene panel testing among young Black breast cancer survivors. Breast J. 2020 Oct;26(10):2112-2114. Epub 2020 Apr 22. PMID: 32319712.

Permanent link to this article: https://inheritedcancer.net/pub42220/

ICARE Publication February 2020

Disparities in BRCA counseling across providers in a diverse population of young breast cancer survivors

Abstract Purpose: All women diagnosed with breast cancer (BC) ≤age 50 should be referred for genetic counseling (GC) and testing. We sought to compare differences in provider practices and access across a racially and ethnically diverse population of young BC survivors. Methods: A registry-based sample of women diagnosed with invasive BC ≤age 50 from 2009 to 2012 …

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Permanent link to this article: https://inheritedcancer.net/pub21820/

ICARE Publication January 2020

Breast cancer screening implications of risk modeling among female relatives of ATM and CHEK2 carriers

Abstract Background: With the increasing use of multigene panel tests, pathogenic and likely pathogenic (P/LP) variants are identified more frequently in the moderate-penetrance breast cancer genes ATM and CHEK2. Lifetime breast cancer risk among women with P/LP variants in these genes generally exceeds 20%, meeting the threshold at which high-risk breast cancer screening through breast magnetic …

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Permanent link to this article: https://inheritedcancer.net/pub12220/

ICARE Publication January 2020

The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer

Abstract Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black …

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Permanent link to this article: https://inheritedcancer.net/pub10720/

ICARE Publication December 2019

Cancer Risks Associated With Germline PALB2 Pathogenic Variants: An International Study of 524 Families

Abstract Purpose: To estimate age-specific relative and absolute cancer risks of breast cancer and to estimate risks of ovarian, pancreatic, male breast, prostate, and colorectal cancers associated with germline PALB2 pathogenic variants (PVs) because these risks have not been extensively characterized. Methods: We analyzed data from 524 families with PALB2 PVs from 21 countries. Complex segregation analysis was used to estimate …

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Permanent link to this article: https://inheritedcancer.net/pub121619/

ICARE Publication December 2019

Points to consider: is there evidence to support BRCA1/2 and other inherited breast cancer genetic testing for all breast cancer patients? A statement of the American College of Medical Genetics and Genomics (ACMG)

No abstract available Pal T, et al. Points to consider: is there evidence to support BRCA1/2 and other inherited breast cancer genetic testing for all breast cancer patients? A statement of the American College of Medical Genetics and Genomics (ACMG). Genet Med. 2020 Apr;22(4):681-685. Epub 2019 Dec 13. PMID: 33455826.

Permanent link to this article: https://inheritedcancer.net/pub121319/

ICARE Publication November 2019

Sex Disparity Observed for Oncotype DX Breast Recurrence Score in Predicting Mortality Among Patients with Early Stage ER-Positive Breast Cancer

Abstract Purpose: Prognostic value of Oncotype DX Breast Recurrence Score (RS) in male patients with breast cancer is understudied. We evaluated associations of RS with overall mortality in male patients with breast cancer and compared it with female counterparts. Experimental design: With a cohort of 848 male and 110,898 female patients with breast cancer identified from the …

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Permanent link to this article: https://inheritedcancer.net/pub112019/

ICARE Publication November 2019

Impact of Genetic Testing on Risk-Management Behavior of Black Breast Cancer Survivors: A Longitudinal, Observational Study

Abstract Background: Black women are overrepresented among premenopausal breast cancer (BC) survivors. These patients warrant genetic testing (GT) followed by risk-reducing behaviors. This study documented patterns and predictors of cancer risk-management behaviors among young black BC survivors after GT. Methods: Black women (n = 143) with a diagnosis of BC at the age of 50 years or …

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Permanent link to this article: https://inheritedcancer.net/pub110119/

ICARE Publication September 2019

Overall Mortality After Diagnosis of Breast Cancer in Men vs Women

Abstract Importance: Survival differences between male and female patients with breast cancer have been reported, but the underlying factors associated with the disparity have not been fully studied. This understanding is fundamental to developing strategies for cancer treatment and survivorship care. Objective: To compare mortality between male and female patients with breast cancer and quantitatively evaluate the …

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Permanent link to this article: https://inheritedcancer.net/pub91919/

ICARE Publication April 2019

A Framework for Pilot Testing Health Risk Video Narratives

Abstract Narrative messages may be superior to didactic messages when providing educational information due to their natural format for information sharing, ability to engage audiences, and engender positive thoughts about the message. Although narrative messages are gaining popularity in health promotion, little guidance exists regarding the development phase. Our team created a psychosocial narrative video …

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Permanent link to this article: https://inheritedcancer.net/pub41819/

ICARE Publication April 2019

International trends in the uptake of cancer risk reduction strategies in women with a BRCA1 or BRCA2 mutation

Abstract Background: Women with a BRCA1 or BRCA2 mutation face high risks of breast and ovarian cancer. In the current study, we report on uptake of cancer screening and risk-reduction options in a cohort of BRCA mutation carriers from ten countries over two time periods (1995 to 2008 and 2009 to 2017). Methods: Eligible subjects were identified …

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Permanent link to this article: https://inheritedcancer.net/pub41119/

ICARE Publication April 2019

A randomized controlled intervention to promote readiness to genetic counseling for breast cancer survivors

Abstract Objective: Breast cancer (BC) survivors with a genetic mutation are at higher risk for subsequent cancer; knowing genetic risk status could help survivors make decisions about follow-up screening. Uptake of genetic counseling and testing (GC/GT) to determine BRCA status is low among high risk BC survivors. This study assessed feasibility, acceptability, and preliminary efficacy of …

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Permanent link to this article: https://inheritedcancer.net/pub41119-2/

ICARE Publication January 2019

Genetic Testing Across Young Hispanic and Non-Hispanic White Breast Cancer Survivors: Facilitators, Barriers, and Awareness of the Genetic Information Nondiscrimination Act

Abstract Aims: This study compared facilitators and barriers to genetic testing and determined awareness about the Genetic Information Nondiscrimination Act (GINA) across young Hispanic and non-Hispanic white (NHW) breast cancer (BC) survivors. Materials and methods: Women diagnosed with BC of age ≤50 years in 2009-2012 were recruited through the Florida State Cancer Registry to complete a questionnaire. …

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Permanent link to this article: https://inheritedcancer.net/pub12419/

ICARE Publication November 2018

Health beliefs associated with readiness for genetic counseling among high risk breast cancer survivors

Abstract We used the Health Belief Model (HBM) to explore factors associated with readiness for genetic counseling among breast cancer survivors. Breast cancer survivors meeting NCCN genetic counseling referral criteria completed questionnaires capturing demographic and clinical information and factors guided by the HBM, including health beliefs, psychosocial variables, and cues to action. Using logistic regression, …

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Permanent link to this article: https://inheritedcancer.net/pub112818/

ICARE Publication August 2017

A community-academic partnership to explore informational needs of African American women as a primer for cancer clinical trial recruitment

Abstract Background: African Americans (AAs) are less likely to participate in cancer clinical trials (CCTs) despite experiencing disproportionately higher rates of cancer mortality. As a way to address these ongoing disparities, this study sought to qualitatively explore informational needs regarding CCTs among AA women and identify message considerations for educational information targeting AA women and their …

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Permanent link to this article: https://inheritedcancer.net/pub82217/