Tracking the dissemination of a culturally targeted brochure to promote awareness of hereditary breast and ovarian cancer among Black women
Introduction
Women with a BRCA1 or BRCA2 (BRCA) mutation have a 40–87% risk to develop breast cancer and a 35–65% risk for ovarian cancer [1]. A woman identified with a harmful (or ‘deleterious’) BRCA mutation can be provided with more intensive prevention measures to reduce breast and ovarian cancer incidence and mortality [2], [3]. Although testing for BRCA mutations has been available since the 1990s, research consistently indicates Black women, compared to White women, are less likely to participate in genetic counseling [4] and testing [5]. Yet, recent studies found BRCA mutation prevalence in Black women in the United States to be double that of non-Hispanic White women [6], [7], [8]. These results are consistent with findings about prevalence of BRCA mutations in a sample of Nigerian women with breast cancer [9]. Cumulatively, results indicate Black women age 50 or younger with a personal or family history of breast and/or ovarian cancer are particularly good candidates for genetic counseling and testing.
Numerous system level barriers (i.e., lack of healthcare provider referral, insurance, access, cost) were identified as preventing Black women from seeking genetic counseling and testing [10], [11]. However, among studies controlling for systemic barriers, Black women were less likely than White women to proceed with genetic counseling and testing [12]. Additionally, when controlling for other factors such as: risk for carrying a BRCA mutation, socioeconomic status, risk perception, attitudes, or primary care physician recommendations, Black women were still less likely to participate in genetic counseling and testing compared with White female equivalents [4]. Low rates of genetic counseling service uptake among Black women at risk for hereditary breast and ovarian cancer (HBOC) have been attributed to concerns about stigma, discrimination and a lack of trust in the medical profession [13], [14], [15], [16]. However, one study found Black women, after learning about genetic counseling and testing, held positive attitudes regarding the benefits of genetic counseling [13], and another found Black women’s attitudes were even more positive than their White counterparts [17]. Therefore, it seems a principle barrier to obtaining genetic services among Black women is a lack of knowledge. To that effect, a recent study identified low levels of familiarity with and knowledge of genetic counseling and testing as the most significant barrier to receiving genetic counseling and testing among Black women at medium and high risk for HBOC [18].
Interventions addressing barriers to genetic counseling participation may be useful in promoting genetic counseling uptake among young Black women with breast cancer [19]. Although recent evidence suggested differences in genetic testing may be partly explained by cultural differences rather than disparities [20], the overwhelming evidence for a lack of knowledge relating to genetic counseling and testing among Black women indicates a need for a culturally appropriate intervention designed to increase knowledge and awareness of genetic counseling and testing [14], [18], [21]. Furthermore, increased knowledge about genetic counseling and testing will allow Black women to make informed decisions regarding genetic counseling and testing.
A history of medical mistrust, cancer fears, and concern for privacy have created challenges to communication about cancer in the Black population [22], [23]. Studies assessing information seeking behaviors among Black community members about cancer revealed sources such as brochures and booklets and information gathered through interpersonal channels including personal physicians, friends, support groups, churches, community fairs, and public health departments were viewed as trustworthy [22], [23]. Voluntary membership to these interpersonal networks increased trustworthiness and the persuasive impact of the messages [24]. Therefore, interventions for Black women should consider brochures or booklets that capitalize on pre-existing social network ties as an important strategy to disseminate health related information.
In 2005 a Community Advisory Panel (CAP) of breast cancer survivors, community leaders and community healthcare providers in the Black community was established as part of a project called the Breast Cancer Genetics Research and Education for African American Women Team (B-GREAT). The CAP was formed to provide guidance about statewide recruitment efforts of young Black women to genetic counseling and testing studies. In the initial phase of the project, a need for outreach and educational materials focused on increasing awareness about hereditary breast and ovarian cancer (HBOC) among Black women became apparent. As no such validated brochures existed at that time, an original study brochure, developed and tested through a community-based participatory approach and learner verification [25] was modified, tested in focus groups with the target audience and revised based on feedback. This process is described in an earlier publication [26]. Cultural tailoring was implemented by including pictures, narratives and images representative of Black culture, describing hereditary cancer as a relevant problem for Black women, and using language suggested by community members and focus group participants [26]. The resulting brochure titled The Family Link between Breast and Ovarian Cancer in Black Women was well received by target audience members. Consistent with calls for more research exploring dissemination of cancer prevention and control programs [27], [28], this study uses Roger’s Diffusion of Innovation Theory (DOI) [29] as a framework to report on the passive dissemination of a culturally targeted brochure to increase awareness of HBOC in Black women. The main outcomes of interest include: (1) the rate at which brochures are disseminated per year, and (2) the number of states where requests for brochures originated. Arguably, if the rate of brochure dissemination is maintained or increases each subsequent project year, and if the numbers of states from which requests are initiated increases, then dissemination is successfully occurring.
A reported challenge in dissemination research is a lack of clear definition and conceptualization of dissemination [27], [30]. As this report uses DOI as its framework, Roger’s definition of diffusion is utilized: “…the process in which an innovation is communicated through certain channels over time among members of a social system. It is a special type of communication, in that the messages are concerned with new ideas” [31]. In this case, the innovation is genetic counseling and testing, and DOI is used to report on the communication (i.e., the brochure) through certain channels (i.e., pre-existing social networks) over time. As indicated by Rogers, lag time is generally required between knowledge and adoption of the innovation (i.e., genetic counseling and testing) [31]. Communication interventions can accelerate knowledge acquisition processes and may ultimately increase adoption rates. In this case, the communication intervention is designed to increase knowledge diffusion about genetic counseling and testing and HBOC. DOI specifies four interacting factors including 1) an innovation, 2) communication channels, 3) social systems, and 4) time. Including all but innovation, three of the four interacting factors will be used to provide a description of the diffusion of a brochure for Black women at increased risk for HBOC to promote genetic counseling and testing.
Section snippets
Methods
Following institutional IRB approval, we notified all CAP members about the brochure and process for requesting the brochure via email and during annual CAP meetings. In addition, study team members periodically attended and distributed brochures during CAP events. To supplement the targeted efforts within our CAP, we engaged in activities to enhance dissemination of information about HBOC in Black women by expanding our reach throughout the state of Florida. To do this, our team identified
Results
Overall, 23,756 brochures were distributed between January 2009–November 2013 (Fig. 1). Brochures primarily were requested by support groups (n = 24; 22%), followed by hospitals or clinics (n = 21; 19%), and other (n = 21; 19%; Table 1). The purpose for requesting brochures was mostly dissemination at a community event (n = 32; 24%), other (n = 32; 24%), and at a health fair (n = 21; 15%; Table 2). Initially, dissemination began in Florida but quickly spread to 28 states (Fig. 2).
Of those who returned the
Discussion
Although Black women have a lower lifetime incidence of breast cancer compared to White women [32], they have a higher incidence of breast cancer at young ages (i.e., under the age of 50), and are more likely to die from breast cancer compared to women of all other races [33], [34]. Young age of breast cancer onset is a hallmark of BRCA mutations, and independent of other risk factors, was found to be significantly predictive of BRCA mutations in Black women [35].
Overall, dissemination occurred
Acknowledgements
Funding: this work was supported by the Florida Breast Cancer Foundation Educational Grants Program. Dr. Courtney L. Scherr was supported by the National Cancer Institute of the National Institutes of Health R25 CA 090312 Behavioral Oncology Education and Career Development grant. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Florida Breast Cancer Foundation Educational Grants Program or the National Institutes of Health.
References (51)
- et al.
Underutilization of BRCA1/2 testing to guide breast cancer treatment: black and Hispanic women particularly at risk
Genet. Med.
(2011) - et al.
Medical mistrust and self-efficacy influence Black women’s level of engagement in BRCA1/2 genetic counseling and testing
J. Natl. Med. Assoc.
(2013) - et al.
Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk
Patient Educ. Couns.
(1997) - et al.
Racial and ethnic disparities in awareness of genetic testing for cancer risk
Am. J. Prev. Med.
(2009) - et al.
Dissemination and implementation research on community-based cancer prevention: a systematic review
Am. J. Prev. Med.
(2010) The impact of mass communication campaigns in the health field
Soc. Sci. Med.
(1983)- et al.
Durability and diffusion of the nutrition intervention in the Working Well Trial: for the working well research Group
Prev. Med.
(1998) - et al.
Implementation of a research awareness program in the critical care unit: effects on families and clinicians
Intensive Crit. Care Nurs.
(2010) - et al.
Cancer risks for BRCA1 and BRCA2 mutation carriers: results from prospective analysis of EMBRACE
J. Natl. Cancer Inst.
(2013) - et al.
Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality
JAMA
(2010)
Life expectancy gains from cancer prevention strategies for women with breast cancer and BRCA1 or BRCA2 mutations
JAMA
Racial differences in the use of brca1/2 testing among women with a family history of breast or ovarian cancer
JAMA
Early onset breast cancer in a registry-based sample of African-American women: BRCA mutation prevalence, and other personal and system-level clinical characteristics
Breast J.
BRCA1/2 in high-risk African American women with breast cancer: providing genetic testing through various recruitment strategies
Genet. Test.
A high frequency of BRCA mutations in young black women with breast cancer residing in Florida
Cancer
High prevalence of BRCA1 and BRCA2 mutations in unselected Nigerian breast cancer patients
Int. J. Cancer
Providers’ perceptions and practices regarding BRCA1/2 genetic counseling and testing in African American women
J. Genet. Couns.
Factors associated with genetic counseling and BRCA testing in a population-based sample of young Black women with breast cancer
Breast Cancer Res. Treat.
Increased uptake of BRCA1/2 genetic testing among African American women with a recent diagnosis of breast cancer
J. Clin. Oncol.
Barriers to genetic testing for breast cancer risk among ethnic minority women: an exploratory study
Ethn. Dis.
Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review
J. Community Genet.
Hereditary Breast and ovarian cancer syndrome
African American women’s limited knowledge and experiences with genetic counseling for hereditary breast cancer
J. Genet. Couns.
Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women
Cancer Epidemiol. Biomarkers Prev.
Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference?
J. Genet. Couns.
Cited by (8)
Addressing disparities in the uptake of genetic counseling and testing in African American women; rationale, design and methods
2023, Contemporary Clinical TrialsThe relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment
2022, Social Science and MedicineCitation Excerpt :This work raises the concern that a biomarker-based definition of AD could shift the character of the stigma associated with AD, which could negatively affect individuals diagnosed early and their families (Ronchetto and Ronchetto, 2021; Rosin et al., 2020). This has been observed in cancer, where a preclinical diagnosis can be associated with stigma (Scherr et al., 2017) and receiving treatment for that diagnosis can also be stigmatizing (Kenen et al., 2007). Understanding of a condition as chronic versus terminal may also affect stigma.
Special section on psychological aspects of cancer: Patient and clinician perspectives
2017, Patient Education and CounselingGermline mutations in other homologous recombination repair-related genes than brca1/2: Predictive or prognostic factors?
2021, Journal of Personalized MedicineBehavioral and social scientists' reflections on genomics: A systematic evaluation within the Society of Behavioral Medicine
2019, Translational Behavioral Medicine