Advancing health equity: A qualitative study assessing barriers and facilitators of implementing hereditary breast and ovarian cancer risk screening tools in community-based organizations.

Genetic counseling and testing (GCT) inform cancer management for persons at risk for hereditary breast and ovarian cancer (HBOC). Community-based organizations (CBOs) may play a role in identifying at-risk Latinx individuals to connect them to GCT but data are lacking. Two academic centers and their four CBO partners planned to implement a validated questionnaire for HBOC risk screening ("HBOC risk screening tool"). This study aimed to assess CBO's preferences for HBOC risk screening tools, as well as the barriers and facilitators anticipated for future implementation. Pre-implementation focus groups were conducted with CBO's staff. Discussions centered on current practices to identify and refer at-risk patients. During the discussion, staff were asked to select one out of five validated HBOC risk screening tools to implement and to discuss anticipated barriers/facilitators for implementation. The four focus groups were coded and qualitative analyzed following the Consolidated Framework for Implementation Research (CFIR) and Health Equity domains. All CBOs chose the Family History Screen 7 (FHS-7). Participants (N = 35) highlighted how the FHS-7 was easy to adapt to better fit the target population and changing guidelines. They had positive attitudes toward implementing the screening tool, stressed how the culture of the organization positioned them to reach the target population, and noted barriers in different CFIR domains (e.g., low knowledge about HBOC and GCT referrals; scarce available resources). Participants pointed to barriers related to health equity domains including limited access to GCT and follow-up care for uninsured and underinsured populations, challenges obtaining accurate family history, and immigration-related barriers. CBOs highlighted the importance of partnering with other stakeholders to overcome barriers. Findings emphasize the need to develop multi-level implementation strategies to overcome barriers and leverage facilitators. This study can inform the development of implementation toolkits for CBOs to implement HBOC screening tools to advance health equity.

A culturally targeted video to promote genetic counseling in a community sample of at-risk US Latina women: The role of the concrete mindset.

Latina women, who are at increased risk of hereditary breast and ovarian cancer (HBOC), have lower use of genetic counseling and testing (GCT) than non-Hispanic White women. In a recent study, culturally targeted video improved psychosocial outcomes related to GCT. Additional analyses examine whether the culturally targeted video improved positive reactions in women who focus on difficulties (concrete mindset) versus women who focus on the final goals (abstract mindset). Participants (N = 32) completed surveys before and immediately after watching the video. The surveys measured attitudes, emotions, and women's mindset. Before watching the video, women with a concrete mindset reported more negative attitudes and negative emotions about GCT than women with an abstract mindset. After watching the video, women with a concrete mindset reported negative attitudes and feelings at levels comparable to those of women with an abstract mindset, reflecting a reduction in their negative attitudes and emotions. The sample size limits the power to find statistically significant differences. Results support the relevance of considering the audience's mindset in the development and testing of public health messages to promote the use of GCT.

Process evaluation of a culturally targeted video for Latinas at risk of hereditary breast and ovarian cancer.

This paper presents a process evaluation of a culturally targeted narrative video about hereditary breast and ovarian cancer (HBOC) for Latina women at risk for HBOC. Spanish-speaking Latina women at risk for HBOC participated in a single arm study (n = 40). Participants watched the video developed by the authors and responded to surveys. We used mixed methods to assess theoretical constructs that are hypothesized mediators of narrative interventions (i.e., transportation or engagement, identification with characters, emotions) and implementation outcomes (e.g., acceptability). Descriptive statistics summarized theoretical constructs and implementation outcomes. We conducted Mann-Whitney U tests to assess the differences in theoretical and implementation outcomes between participants who were affected versus. unaffected and participants with different levels of education and health literacy. We used the consensual qualitative research framework to analyze qualitative data. Participants' mean age was 47.1 years (SD = 9.48). Most participants were high school graduates or less (62.5%). Acceptability of the video was extremely high (Md = 10.0, IQR = 0.2, scale 1-10). Most (82.5%) suggested video dissemination be through social media. Participants were highly engaged (Md = 5.7, IQR = 1.5, scale 1-7), strongly identified with the main character (Md = 8.7, IQR = 2.6, scale 1-10), and reported experiencing mostly positive emotions (Md = 9.5, IQR = 2.8, scale 1-10). Participants with low health literacy and affected participants reported a significantly higher identification with the main character (p<.05). Qualitative data reinforced the quantitative findings. Women reported gaining knowledge, correcting misconceptions, and feeling empowered. Our culturally targeted video is highly acceptable and targets mechanisms of behavior change for narrative interventions. The video is easily disseminable and can be used as an education tool for patients including affected and unaffected women and patients with different education and health literacy levels. Future studies should test the impact of the video in enhancing genetic counseling and testing uptake.

Latinas' knowledge of and experiences with genetic cancer risk assessment: Barriers and facilitators.

Disparities in genetic cancer risk assessment (GCRA) uptake persist between Latinas and Non-Hispanic Whites. This study utilized a mental model approach to interview 20 Latinas (10 affected, 10 unaffected) at increased risk for hereditary breast and ovarian cancer (HBOC). Participants were asked about their knowledge and perceptions of GCRA, HBOC, risk, benefits, motivators, barriers, challenges, and experiences with GCRA. Using the Consensual Qualitative Analysis Framework, two authors independently coded the interviews and applied the final codes upon consensus. Additionally, interviews were coded to identify whether participants spontaneously brought up certain topics without a prompt. Findings identified multiple barriers and facilitators to GCRA uptake in this population, including patient level psychosocial/cultural factors (e.g., limited knowledge, worry about relatives' risk) and healthcare system factors (e.g., receiving no referrals). There were notable differences in awareness and knowledge between affected and unaffected women (e.g., genetic testing awareness), as well as knowledge gaps that were evident in both groups (e.g., age of diagnosis as a risk factor). To reduce disparities in GCRA uptake, interventions should address identified facilitators and barriers. Differences in knowledge and awareness between affected and unaffected women support the development of targeted interventions that address specific knowledge gaps. This study was registered in ClinicalTrials.gov (NCT03075540) by Alejandra Hurtado de Mendoza, Ph.D.

Applying the theory of planned behavior to examine adjuvant endocrine therapy adherence intentions.

OBJECTIVE: Adherence to adjuvant endocrine therapy (AET) in breast cancer survivors is suboptimal. Using the theory of planned behavior (TPB), this study aimed to identify the strongest predictors from the TPB of AET intentions and past behavior and assessed whether ambivalence and anticipatory emotions increased the predictive capacity of TPB. METHODS: Two hundred eighty women diagnosed with hormone positive (HR+) breast cancer who filled at least one prescription of AET responded to a survey measuring TPB constructs, attitudinal ambivalence, and anticipatory emotions. The outcomes were intentions to adhere to AET and past medication adherence (previous 2 weeks). RESULTS: The TPB explained 66% of intentions to adhere to AET (P < 0.001). Ambivalence did not improve the TPB model's predictive value. When emotions were included with TPB, the model explained 70% of adherence intentions F11,226  = 52.84, P < 0.001 (R2c  = .70). This increase of 4% in predictability was statistically significant (ΔR2  = 0.04), F6, 226  = 7.90, P < 0.001. Women who self-reported nonadherence in the past 2 weeks differed significantly in the TPB variables, ambivalence, and anticipatory emotions from adherent women. Nonadherent participants reported lower-future intentions to adhere F1, 236  = 5.63, P = 0.018. CONCLUSIONS: Results suggest key concepts, such as anticipatory positive emotions that should be addressed in future interventions to enhance AET adherence and survivorship.

Cultural adaptations to a telephone genetic counseling protocol and booklet for Latina breast cancer survivors at risk for hereditary breast and ovarian cancer.

Telephone genetic counseling (TGC) is accepted as standard clinical care for people seeking hereditary cancer risk assessment. TGC has been shown to be non-inferior to in-person genetic counseling, but trials have been conducted with a predominantly highly educated, non-Hispanic White population. This article describes the process of culturally adapting a TGC protocol and visual aid booklet for Spanish-preferring Latina breast cancer survivors at risk for hereditary breast and ovarian cancers. The adaptation process included two phases. Phase 1 involved a review of the literature and recommendations from an expert team including community partners. Phase 2 included interviews and a pilot with the target population (n = 14) to collect feedback about the adapted protocol and booklet following steps from the Learner Verification and Revision Framework. We describe the adaptation process and report the main adaptations following the Framework for Reporting Adaptations and Modifications to Evidence-based Interventions (FRAME). Adaptations in Phase 1 were responsive to the target population needs and characteristics (e.g., delivered in Spanish at an appropriate health literacy level, addressing knowledge gaps, targeting cultural values). Phase 2 interviews were crucial to refine details (e.g., selecting words) and to add components to address GCT barriers (e.g., saliva sample video). Cultural adaptations to evidence-based TGC protocols can increase the fit and quality of care for historically underserved populations. As TGC visits become routine in clinical care, it is crucial to consider the needs of diverse communities to adequately promote equity and justice in cancer care.

This article describes the process of adapting a telephone genetic counseling protocol and visual aid booklet for Spanish-preferring Latina breast cancer survivors at increased risk for hereditary breast and ovarian cancer (HBOC). The cultural adaptation process followed two phases. In the first phase, the authors reviewed the literature and obtained insights from interdisciplinary experts. In the second phase, the authors received iterative feedback from fourteen Latina women who were breast cancer survivors, spoke Spanish as a first language, and met criteria to be considered at increased risk for HBOC. Revisions to the protocol and visual aid booklet were conducted iteratively following feedback from the expert team, after the first five women reviewed the booklet, after the second five women reviewed the booklet, and after the final four women completed the entire culturally adapted telephone genetic counseling protocol with the booklet. The final adaptations to the protocol and visual aid booklet were responsive to the target population's needs. Most adaptations made were regarding content. For example, simplifying the material presented, adding culturally relevant images, and developing a video explaining how to collect a saliva sample. Culturally adapting health interventions can improve health outcomes in historically marginalized populations and promote equity.

Addressing disparities in the uptake of genetic counseling and testing in African American women; rationale, design and methods.

BACKGROUND: Genetic counseling and testing (GCT) informs risk reduction and management strategies in women at risk for carrying a pathogenic variation in the BRCA1 or BRCA2 (BRCA1/2) genes. African American (hereinafter referred to as Black) women are less likely to receive GCT services for hereditary breast and ovarian cancer (HBOC). The objective of this work was to examine existing literature regarding successful culturally tailored GCT interventions for Black women and to describe the rationale and protocol for a randomized feasibility trial to test the efficacy of a culturally tailored GCT intervention. METHODS/DESIGN: The For Our Health (FOH) study is a two-arm randomized control trial designed to test the efficacy of a video intervention to promote the uptake of GCT among Black women with a high risk of HBOC. The culturally tailored video intervention targets key beliefs, knowledge gaps, misconceptions, and key anticipated emotions relevant for GCT. After completing the baseline survey, 50 women at risk of HBOC will be randomized (1:1) to one of two trial arms: a YouTube video intervention or a publicly available fact sheet. Final assessments will immediately follow receipt of either video or fact sheet. CONCLUSION: Few studies have tested interventions to improve GCT uptake among Black women. The FOH trial will fill an important scientific gap in knowledge regarding strategies to reduce disparities in GCT among Black women at risk of HBOC.

Adapting a Theoretically-Based intervention for underserved clinical populations at increased risk for hereditary Cancer: Lessons learned from the BRCA-Gist experience.

Background: Minorities at increased risk for Hereditary Breast and Ovarian Cancer (HBOC) frequently have low awareness and use of genetic counseling and testing (GCT). Making sure that evidence-based interventions (EBIs) reach minorities is key to reduce disparities. BRCA-Gist is a theory-informed EBI that has been proven to be efficacious in mostly non-Hispanic White non-clinical populations. We conducted formative work to inform adaptations of BRCA-Gist for use in clinical settings with at-risk diverse women. Methods: Genetic counselors (n = 20) were recruited nationally; at-risk Latinas and Blacks (n = 21) were recruited in Washington DC and Virginia. They completed the BRCA-Gist EBI between April 2018 - September 2019. Participants completed an acceptability scale and an interview to provide suggestions about implementation adaptations. T-tests for independent samples compared acceptability between at-risk women and genetic counselors. The Consensual Qualitative Research Framework was used to code adaptation suggestions. Suggested adaptations were discussed by a multidisciplinary team to integrate fidelity and adaptation considerations. Results: At-risk women had a significantly higher acceptability (M = 4.17, SD = 0.47 vs. M = 3.24, SD = 0.64; p = 0.000; scale 1-5) and satisfaction scores (M = 8.3, SD = 1.3 vs. M = 4.2, SD = 2.0; p = 0.000; scale 1-10) than genetic counselors. Genetic counselors and at-risk women suggested contextual (e.g. format) and content (e.g. shortening) adaptations to enhance the fit of BRCA-Gist for diverse clinical populations. Conclusions: Findings illustrate the process of integrating fidelity and adaptation considerations to ensure that EBIs retain their core components while enhancing the fit to minoritized clinical populations. Future studies will test the efficacy of the adapted BRCA-Gist in a Randomized Controlled Trial.

Association between aspects of social support and health-related quality of life domains among African American and White breast cancer survivors.

PURPOSE: Social support is associated with breast cancer survivors' health-related quality of life (HRQoL). More nuanced information is needed regarding aspects of social support associated with different HRQoL domains among diverse populations. We assessed the association between emotional/informational and tangible support and five HRQoL domains and evaluated race as an effect modifier. METHODS: African American and White women (n = 545) diagnosed with hormone-receptor-positive breast cancer completed a survey that assessed sociodemographic, clinical, and psychosocial factors. We assessed bivariate relationships between emotional/informational and tangible support along with overall HRQoL and each HRQoL domain.We tested interactions between race and emotional/informational and tangible social support using linear regression. RESULTS: The sample included African American (29%) and White (71%) breast cancer survivors. Emotional/informational social support had a statistically significant positive association with emotional well-being (ß = .08, p = 0.005), social well-being (ß = 0.36, p < 0.001), functional well-being (ß = .22, p < .001), breast cancer concerns (ß = .16, p = 0.002), and overall HRQoL (ß = .83, p < .001). Similarly, tangible social support had a statistically significant positive association with emotional well-being (ß = .14, p = 0.004), social well-being (ß = .51, p < .001), functional well-being (ß = .39, p < .001), and overall HRQoL (ß = 1.27, p < .001). The interactions between race and social support were not statistically significant (p > 0.05). CONCLUSIONS: Results underscore the importance of the different social support types among breast cancer survivors, regardless of survivors' race. IMPLICATIONS FOR CANCER SURVIVORS: Population-based interventions can be standardized and disseminated to provide guidance on how to increase emotional/information and tangible support for all breast cancer survivors by caregivers, health providers, and communities.

Cancer Prevention in Indigenous Communities from Guatemala: A Needs Assessment Study.

BACKGROUND: Guatemala lacks cancer prevention strategies and has low screening rates. OBJECTIVE: To assess the history of chronic conditions, risk factors, and cancer screening uptake among three Indigenous populations of Southwestern Guatemala. METHODS: We conducted a health needs assessment. RESULTS: The assessment was completed by 247 adults. Median age was 40 years old (IR: 28-59). Most participants were female (94.3%), of Mayan descent (95.8%), and did not have a primary health care provider (84.2%). Most have never been screened for colorectal (men=100.0%; women=98.8%), prostate (75.0%), breast (90.9%), or cervical (76.9%) cancer, and all have severe tooth decay. However, most participants reported healthy behaviors including being physically active (women=59.7%; men=92.9%), being nonsmokers (women=99.6%; men=78.6%), and not consuming alcohol (women=82.3%; men=46.7%). CONCLUSIONS: Although most participants reported healthy behaviors, there is a remarkable lack of access to cancer screening. An increase in cancer incidence is expected unless cancer prevention efforts are undertaken.

Developing a culturally targeted video to enhance the use of genetic counseling in Latina women at increased risk for hereditary breast and ovarian cancer.

Disparities for genetic cancer risk assessment (GCRA) for hereditary breast and ovarian cancer (HBOC) persist between Latina and non-Hispanic Whites. There are few tested culturally targeted interventions. We developed a culturally targeted video to enhance GCRA uptake in at-risk Latinas. Interviews with healthcare providers (n = 20) and at-risk Latinas (n = 20) were conducted as formative research to inform the development of the video. Findings from the formative research, health behavior conceptual models, and evidence-based risk communication strategies informed the messages for the script. Then, we conducted a focus group with at-risk Latinas (n = 7) to obtain feedback for final refinement of the script. The final video was piloted for acceptability and potential dissemination in a sample of Latino community health workers (CHWs) (n = 31). Providers and at-risk Latinas suggested using simple language and visual aids to facilitate comprehension. Participants in the focus group identified areas for further clarification (e.g., cost). The result was an 18-min video that illustrates "Rosa's" story. Rosa learns about HBOC risk factors and overcomes barriers to attend genetic counseling. CHWs reported high overall satisfaction with the video (M = 9.61, SD = .88, range 1-10). A culturally targeted video has the potential to reach underserved populations with low literacy and English proficiency.

Culturally Targeted Video Improves Psychosocial Outcomes in Latina Women at Risk of Hereditary Breast and Ovarian Cancer.

Latina women at risk of hereditary breast and ovarian cancer (HBOC) have lower awareness, knowledge, and use of genetic counseling and testing services (GCT) than non-Latina Whites. Few interventions have been developed to reduce these disparities among at-risk Latinas. This pilot study assessed the impact of a culturally targeted narrative video developed by our team. The study included 40 Latina immigrants living in the United States who were at risk of HBOC, including affected and unaffected women. We assessed pre-post differences in psychosocial outcomes. Participants were 47.35 years old on average (SD = 9.48). Most (70%) were unaffected with cancer, had an annual income of $40,000 or less (65%), an education of High School or less (62.5%), and were uninsured (77.5%). The video significantly enhanced knowledge (p < 0.001), positive attitudes (p < 0.05), anticipatory positive emotions (p < 0.05), and intentions to participate in counseling (p < 0.001). Importantly, the video also significantly reduced negative attitudes (p < 0.05), and attitudinal ambivalence (p < 0.001). The culturally targeted video shows preliminary evidence in improving psychosocial outcomes related to GCT uptake in Latinas at risk for HBOC. This intervention is a promising easily-disseminable strategy to address disparities in GCT utilization.

Provider's Perceptions of Barriers and Facilitators for Latinas to Participate in Genetic Cancer Risk Assessment for Hereditary Breast and Ovarian Cancer.

The Comprehensive Cancer Network (NCCN) recommends genetic cancer risk assessment (GCRA) referral to women at high risk of hereditary breast and ovarian cancer. Latinas affected by breast cancer have the second highest prevalence of BRCA1/2 mutations after Ashkenazi Jews. Compared to non-Hispanic Whites, Latinas have lower GCRA uptake. While some studies have identified barriers for GCRA use in this population, few studies have focused on health care providers' perspectives. The purpose of the study was to examine providers' perceptions of barriers and facilitators for at-risk Latina women to participate in GCRA and their experiences providing services to this population. We conducted semi-structured interviews with 20 healthcare providers (e.g., genetic counselors, patient navigators) recruited nationally through snowballing. Interviews were transcribed. Two coders independently coded each interview and then met to reconcile the codes using Consensual Qualitative Research guidelines. Providers identified several facilitators for GCRA uptake (e.g., family, treatment/prevention decisions) and barriers (e.g., cost, referrals, awareness, stigma). Genetic counselors described important aspects to consider when working with at-risk Latina including language barriers, obtaining accurate family histories, family communication, and testing relatives who live outside the US. Findings from this study can inform future interventions to enhance uptake and quality of GCRA in at-risk Latina women to reduce disparities.

Engaging Latina breast cancer survivors in research: building a social network research registry.

Disparities persist in breast cancer outcomes between Latina survivors and non-Hispanic Whites. Identifying methods to ensure that Latinas participate in and benefit from translational behavioral medicine research is important to reduce disparities. We developed a "Social Network Research Registry" to enhance Latina survivors' engagement in research and explored the social networks and research/cancer organization participation in this population. We initially recruited 30 Latina breast cancer survivors ("seeds") from community organizations and identified other survivors through snowball sampling. Guided by Social Network Analysis, we assessed the structural (e.g., size) and functional (e.g., social support) characteristics of the network, willingness to join the registry, prior research participation, involvement in cancer organizations, and interest in different types of research and roles in research. The resulting network size was 98, including 53 women who enrolled in the study and 45 who were listed in the network but did not enroll. All enrolled participants (N = 53) agreed to be part of the registry. We identified 15 participants who occupied strategic positions as hubs and/or bridges. Women who were currently involved in cancer organizations were more likely to have participated in research (70.3% vs. 18.8%); χ2 (1, 53) = 11.97, p = .001. Most were interested in surveys/interviews (98%), behavioral interventions (96%), and becoming health promoters (79%). The Social Network Research Registry is an acceptable and feasible strategy to engage underrepresented Latina survivors in research. Social network analysis can be useful to identify members who occupy key positions to enhance recruitment and translational efforts.