Development of a Brochure for Increasing Awareness of Inherited Breast Cancer in Black Women

Vadaparampil, Susan T.; Quinn, Gwendolyn P.; Gjyshi, Anxhela; Pal, Tuya

doi:10.1089/gtmb.2010.0102

Cited by 15 publications

(15 citation statements)

References 33 publications

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“…Offering basic genetic education and gaining community consultation are two strategies to examine community-specific concerns and/or benefits regarding genetic services. 34,35 Similar efforts regarding HIV/AIDS helped penetrate mistrust in the Black community and improve service access. 36 Disparities in receipt of GC/T have been well-documented and yet few successful strategies to remediate these differences have been identified.…”

Section: Discussionmentioning

confidence: 99%

Medical Mistrust Influences Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing

Sheppard

Mays

Tercyak

et al. 2013

Journal of the National Medical Association

105

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Clinical evidence supports the value of BRCA1/2 genetic counseling and testing (GC/T) for managing hereditary breast and ovarian cancer risk; however, BRCA1/2 GC/T is underutilized among Black women and reasons for low use remain elusive. We examined the potential influence of socio-cultural factors (medical mistrust, concerns about genetic discrimination) on GC/T engagement in a sample of 100 Black women at increased risk for carrying a BRCA1/2 mutation. Eligible participants fell into one of three groups: 1) healthy women with ≥ 1 first-degree relative (FDR) affected by breast and/or ovarian cancer, 2) women diagnosed with breast cancer at age ≤ 50, and 3) women diagnosed with breast and/or ovarian cancer at age ≥ 50 with either one FDR or two second degree relatives with breast and/or ovarian cancer. Participants were recruited from clinical and community settings and completed a semi-structured interview. Study variable relationships were examined using bivariate tests and multivariate regression analysis. Forty-three percent of participants were aware of GC/T services. Yet referral and receipt of GC/T services in this sample was low (28%). After accounting for sociodemographic factors, women with higher self-efficacy had greater GC/T engagement (B = 0.37, p < .001), while those with higher medical mistrust had lower GC/T engagement (B = −0.26, p <. 01). Interventions targeted towards increasing provider referrals may facilitate higher levels of engagement in GC/T services. Individual interventions that enhance women’s personal confidence in obtaining GC/T may also be useful in promoting GC/T engagement.

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Section: Discussionmentioning

confidence: 99%

Medical Mistrust Influences Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing

Sheppard

Mays

Tercyak

et al. 2013

Journal of the National Medical Association

105

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“…Ultimately, our findings may be due to a combination of the lack of awareness of the importance of BRCA testing at both the patient and provider level . In recognition of the need for targeted information, a culturally targeted brochure designed to increase awareness about inherited breast cancer was developed , and has been disseminated to over 10,000 individuals to date.…”

Section: Discussionmentioning

confidence: 99%

Early Onset Breast Cancer in a Registry-based Sample of African-American Women:BRCAMutation Prevalence, and Other Personal and System-level Clinical Characteristics

et al. 2013

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Young Black women are disproportionately afflicted with breast cancer, a proportion of which may be due to BRCA1 and BRCA2 (BRCA) gene mutations. In a sample of Black women with early onset breast cancer, we evaluated BRCA mutations and explored personal and system-level clinical characteristics. Black women diagnosed with invasive breast cancer (age ≤50) were recruited through the state cancer registry. Participants completed a questionnaire, genetic counseling and BRCA testing. Of the 48 women who consented to study participation, 46 provided a usable biologic specimen for BRCA testing. The overall prevalence of BRCA mutations and variants of uncertain significance (VUS) in participants was 6.5% and 34.8%, respectively. Of these, only 14 were referred for genetic counseling prior to study enrollment. Overall, those participants who chose to undergo bilateral mastectomy had a higher number of relatives with breast and ovarian cancer (p = 0.024) and a higher household income (p = 0.009). BRCA mutation prevalence and the high prevalence of VUS in participants are consistent with prior studies. Furthermore, clinical factors such as family history and financial means may influence type of surgery recommended and chosen, at both the provider and patient level, respectively. Finally, the limited number of patients referred for genetic counseling prior to surgical treatment for breast cancer may represent a missed clinical opportunity to inform surgical decisions.

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“…Other factors which likely contributed to our recruitment success include our efforts to target recruitment materials developed and refined through our prior studies, our statewide outreach efforts to raise awareness about inherited breast cancer in Black women (as outlined on our website: www.bgreatinitiative.com), and ongoing guidance on recruitment strategies from our longstanding community-academic partnership with our community advisory panel (23–26). Consistent with previous studies (27–29), this academic-community partnership was likely instrumental in the recruitment success achieved by the study team.…”

Section: Discussionmentioning

confidence: 99%

Recruitment of a Population‐Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry

et al. 2015

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Purpose Given that Black women remain underrepresented in clinical research studies, we sought to recruit a population-based sample of young Black women with breast cancer through a state cancer registry. Methods Demographic and clinical information on all Black women diagnosed with invasive breast cancer at or below age 50 between 2009–2012 in Florida was obtained through the state cancer registry. Survivors were invited to participate in the study through state-mandated recruitment methods. Participant demographic and clinical characteristics were compared using Chi-square tests for categorical variables and the two sample t-test for continuous variables to identify differences between: 1) consented participants versus all other eligible; and 2) living versus deceased. Results Of the 1647 young Black women with breast cancer, mean age at diagnosis was 42.5, with the majority having localized or regional disease, unmarried, privately insured, and employed. There were no significant differences in demographic and clinical variables between the 456 consented study participants versus the remaining 1191 presumed eligible individuals. Compared to potential participants, women determined to be deceased prior to recruitment (n=182) were significantly more likely to have distant disease and a triple negative phenotype. They were also significantly more likely to be unemployed, and uninsured or have public insurance (i.e., Medicaid or Medicare). Conclusion Our results demonstrate that recruitment of a population-based sample of breast cancer survivors through a state cancer registry is a feasible strategy in this underserved and underrepresented population. However, survival bias, which was observed due to the lag time between diagnosis and recruitment, is important to adjust for when generalizing findings to all young Black breast cancer patients.

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Development of a Brochure for Increasing Awareness of Inherited Breast Cancer in Black Women

Cited by 15 publications

References 33 publications

Medical Mistrust Influences Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing

Medical Mistrust Influences Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing

Early Onset Breast Cancer in a Registry-based Sample of African-American Women:BRCAMutation Prevalence, and Other Personal and System-level Clinical Characteristics

Recruitment of a Population‐Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry

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