Recruitment of Black Women for a Study of Inherited Breast Cancer Using a Cancer Registry–Based Approach

Pal, Tuya; Rocchio, E.; Garcia, Ana Laura; Rivers, Desiree; Vadaparampil, Susan T.

doi:10.1089/gtmb.2010.0098

Cited by 21 publications

(26 citation statements)

References 59 publications

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“…Including women from non-clinical settings is important because optimal genetic counseling and testing practices will involve engaging individuals who may not be interacting with the healthcare system or with providers who would talk to them about genetic testing [31, 34, 52, 60]. Consistent with previous research done by Pal and colleagues, the women in this sample had a high interest in BRCA1/2 testing, despite limited exposure [48]. …”

Section: Discussionmentioning

confidence: 56%

“…Still, strategies to improve accrual of Black women into breast cancer genomic research have had limited success, and data on determinants of participation are equivocal [16, 47, 48]. One kindred study found that Black women with family histories of breast or ovarian cancers were interested in genetic counseling and testing for BRCA1/2 [23]; however, multiple studies with Black/White samples have shown that Black women in the general population as well as those with a recent breast cancer diagnosis have lower awareness of, interest in, and uptake of BRCA1/2 counseling and testing than their White counterparts [3, 36, 49–51].…”

Section: Introductionmentioning

confidence: 99%

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What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

et al. 2014

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Black women are just as likely to have hereditary breast cancer mutations as White women, yet their participation in genetic counseling and testing is substantially lower. This study sought to describe Black women’s awareness and perceptions of BRCA1/2 testing and to identify barriers and motivators to seeking BRCA1/2 services. Fifty intercept interviews were conducted with Black women in public places (a professional women’s basketball game, a grocery store, a faith-based community event, and the waiting area at a breast care clinic) in Washington, DC. More than half of the women (54%) were aware that genetic tests to determine risk for certain breast and ovarian cancers exist, but the majority (88%) had never heard of BRCA1/2 , specifically. After hearing a description of BRCA1/2 genetic markers, 82% stated that they would agree to BRCA1/2 testing if it was offered to them. Perceived advantages of testing included cancer prevention and the ability to share information with family members. Perceived disadvantages included emotional distress associated with identification of the mutation and the potential misuse of results to deny healthcare or employment. Physician recommendation, self-care, and known family history were among the motivators for testing. Women listed possible media and venues for intervention. In spite of low rates of BRCA1/2 testing in the Black community, women in this sample were open to the idea. Interventions that address barriers and include cultural tailoring are necessary.

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Section: Discussionmentioning

confidence: 56%

Section: Introductionmentioning

confidence: 99%

What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

et al. 2014

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“…Through protocols approved through the Institutional Review Boards at the University of South Florida and the Florida Department of Health, recruitment of Black women was initiated in 2012 as previously described, 29, 30 and that of White and Hispanic women was initiated in 2014. Using information on all eligible participants released by the Florida State Cancer Registry, contact was attempted among all Black and Hispanic women in the sampling frame and in a random sample of White women (Figure 1).…”

Section: Methodsmentioning

confidence: 99%

Racial disparities in BRCA testing and cancer risk management across a population‐based sample of young breast cancer survivors

Cragun

Weidner

Lewis

et al. 2017

Cancer

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215

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Background Breast cancer (BC) disparities may widen with genomic advances. We compared non-Hispanic white (NHW), Black, and Hispanic BC survivors for: 1) cancer risk management practices (CRM) among BRCA carriers; and 2) provider discussion and receipt of genetic testing. Methods A population-based sample of NHW, Black, and Hispanic women diagnosed with invasive BC ≤ age 50 in 2009–2012 were recruited through the state cancer registry. Using multiple logistic regression we compared CRM in BRCA carriers and association of demographic and clinical variables with provider discussion and receipt of testing. Results Of the 1622 participants, 36.1% (159/440) Blacks, 64.5% (579/897) NHW, 49.6% (58/117) Spanish-speaking Hispanics, and 69.0% (116/168) English-speaking Hispanics had BRCA testing, of whom 90 had a pathogenic BRCA mutation. Among BRCA carriers, RRM and RRSO rates were significantly lower among Blacks compared to Hispanics and NHW after controlling clinical and demographic variables (p=0.025 and 0.008, respectively). Compared to NHW, discussion of genetic testing with a provider was 16 times less likely among Blacks (p<0.0001) and nearly two times less likely among Spanish-speaking Hispanics (p=0.04) after controlling clinical and sociodemographic factors. Conclusions Our results suggest lower rates of RRSO among Black compared to Hispanic and NHW BRCA carriers, which is concerning as benefits from genetic testing arise from CRM options. Furthermore, lower BRCA testing rates among Blacks may partially be due to lower likelihood of provider discussion. Future studies are needed to improve cancer risk identification and management practices across all populations to prevent the widening of disparities.

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“…Participants were recruited 6-18 months after their diagnosis using previously described state-mandated recruitment methods [22], which consisted of 2 mailings, 3 weeks apart, including a ‘telephone response card’ to give potential participants the option to either decline (i.e., indicating that they did not wish to be contacted by phone) or express interest in participation (i.e., indicating that they were interested in having the study team call them to follow-up). If no response was received within 3 weeks of the second mailing, a member of the study team attempted to contact the potential participant by telephone to explain the study and determine interest in participation.…”

Section: Methodsmentioning

confidence: 99%

Factors associated with genetic counseling and BRCA testing in a population-based sample of young Black women with breast cancer

Cragun

Bonner

Kim

et al. 2015

Breast Cancer Res Treat

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Purpose Concerns about the potential for genomic advances to increase health disparities have been raised. Thus it is important to assess referral and uptake of genetic counseling (GC) and testing in minority populations at high risk for hereditary breast and ovarian cancer (HBOC). Methods Black women diagnosed with invasive breast cancer ≤ age 50 in 2009-2012 were recruited through the Florida State Cancer Registry 6-18 months following diagnosis and completed a baseline questionnaire. Summary statistics, Chi-square tests, and path modeling were conducted to examine which demographic and clinical variables were associated with referral and access to genetic services. Results Of the 440 participants, all met national criteria for GC yet only 224 (51%) were referred for or received GC and/or HBOC testing. Variables most strongly associated with healthcare provider referral for GC included having a college education (OR=2.1), diagnosis at or below age 45 (OR=2.0), and triple negative tumor receptor status (OR=1.7). The strongest association with receipt of GC and/or HBOC testing was healthcare provider referral (OR=7.9), followed by private health insurance at diagnosis (OR=2.8), and household income greater than $35,000 in the year prior to diagnosis (OR=2.0). Conclusions Study findings suggest efforts are needed to improve genetic services access among a population-based sample of high-risk Black women. These results indicate that socioeconomic factors and physician referral patterns contribute to disparities in access to genetic services within this underserved minority population.

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Recruitment of Black Women for a Study of Inherited Breast Cancer Using a Cancer Registry–Based Approach

Cited by 21 publications

References 59 publications

What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

Racial disparities in BRCA testing and cancer risk management across a population‐based sample of young breast cancer survivors

Factors associated with genetic counseling and BRCA testing in a population-based sample of young Black women with breast cancer

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