Attitudes Toward Breast Cancer Genetic Testing in Five Special Population Groups

Purpose: This study examined interest in and attitudes toward genetic testing in 5 different population groups. Methods: The survey included African American, Asian American, Latina, Native American, and Appalachian women with varying familial histories of breast cancer. A total of 49 women were interviewed in person. Descriptive and nonparametric statistical techniques were used to assess ethnic group differences. Results: Overall, interest in testing was high. All groups endorsed more benefits than risks. There were group differences regarding endorsement of specific benefits and risks: testing to “follow doctor recommendations” (p=0.017), “concern for effects on family” (p=0.044), “distrust of modern medicine” (p=0.036), “cost” (p=0.025), and “concerns about communication of results to others” (p=0.032). There was a significant inverse relationship between interest and genetic testing cost (p Conclusion: Cost may be an important barrier to obtaining genetic testing services, and participants would benefit by genetic counseling that incorporates the unique cultural values and beliefs of each group to create an individualized, culturally competent program. Further research about attitudes toward genetic testing is needed among Asian Americans, Native Americans, and Appalachians for whom data are severely lacking. Future study of the different Latina perceptions toward genetic testing are encouraged

A Su Salud En Acción: Replicating a Model to Increase Utilization of Cancer Screening among Low Income Latinas

Latinas suffer longstanding disparities in breast cancer survival and cervical cancer incidence and mortality compared to non-Hispanic white women. This study assessed the feasibility of replicating the theory-based A Su Salud En Acción communication model to impact cancer screening behaviors in two at-need Nevada clinics. The intervention significantly increased the number of mammograms and Pap smears among Latinas. Mammograms and Pap smear rates increased by 58.7‰ and 51.8‰ respectively in the pilot site (95% CI 40.1-49.1 and 47.1-56.5 respectively) and by 33.7‰ and 7.5‰ respectively (95% CI 15.6-51.9 and 4.3-10.6) in the replication site, among women ages 50-64. This study demonstrated the feasibility of adapting and replicating the A Su Salud En Acción model by lay public health workers at community clinics serving a large Latino community in Nevada in need of cancer screening promotion programs. With basic training (with a comprehensive and user-friendly training tool) and technical assistance, both sites replicated the model, which proved effective in increasing cancer screening rates among low-income Latinas. This study contributes additional knowledge about replicating effective models and interventions in real-world environments and warrants more research on the issues and processes involved in the replication of effective programs

Salud America! Developing a National Latino Childhood Obesity Research Agenda.

U.S. childhood obesity has reached epidemic proportions, with one third of children overweight or obese. Latino children have some of the highest obesity rates, a concern because they are part of the youngest and fastest-growing U.S. minority group. Unfortunately, scarce research data on Latinos hinders the development and implementation of evidence-based, culturally appropriate childhood obesity interventions. In response, the Salud America! network conducted a national Delphi survey among researchers and stakeholders to identify research priorities to address Latino childhood obesity and compare differences by occupation and race or ethnicity. The resulting first-ever National Latino Childhood Obesity Research Agenda provides a framework to stimulate research and collaboration among investigators, providers, and communities, and inform policy makers about the epidemic's seriousness and specific needs for priority funding. The agenda ranks family as the main ecological level to prevent Latino childhood obesity--followed by community, school, society, and individual-and ranks top research priorities in each level.https://journals.sagepub.com/doi/abs/10.1177/109019811037233

Improving quality of life among latino cancer survivors: Design of a randomized trial of patient navigation

Latino cancer survivors have lower survival rates for most cancers relative to non-Latino whites, including, colorectal, prostate, and breast. In addition, Latinos experience health disparities in both access to care and quality of care. Experts recommend providing psychosocial services as an integral part of quality cancer care; however, there continues to be a paucity of information on the efficacy of Patient Navigators (PNs) in linking Latino cancer survivors to appropriate psychosocial services. Redes En Acción: The National Latino Cancer Research Network partnered with LIVESTRONG Cancer Navigation Services Patient Navigation program (PN-LCNS) to provide an intervention to improve wellness and increase access to psychosocial services among non-metastatic Latino cancer survivors from Texas and Chicago using trained bilingual, bicultural PNs. The study design involved a mixed-methods approach in two phases. Phase I used a Community-Based Participatory Research (CBPR) approach wherein PNs engaged community partners who provide services to breast, colorectal and prostate Latino cancer survivors. Phase II was a randomized controlled trial (RCT) that evaluated the efficacy of combining PN-facilitated interventions with the culturally tailored and CBPR-informed PN-LCNS in 300 breast, prostate and colorectal Latino cancer survivors. Outcomes investigated were improvements in: 1) quality of life (QOL), both general and disease-specific, and; 2) treatment follow-up compliance. While limited work has addressed the psychosocial needs of Latino cancer survivors, culturally-competent interventions using PNs have potential to address these needs and significantly improve Latino cancer survivorship

Abstract C54: Reducing time-to-treatment in underserved Latinas with breast cancer: The Six Cities Study

Abstract Background: Breast cancer is the leading cause of Latina cancer deaths. Time from diagnosis to treatment is critical in optimizing care. Patient navigation (PN) holds promise for timely breast cancer treatment promotion, yet efficacy among underserved women is insufficiently documented. Methods: Redes En Acción: The National Latino Cancer Research Network evaluated a theory-driven, culturally-sensitive PN program for Latinas with breast cancer in six U.S. cities. We analyzed 109 Latinas diagnosed with breast cancer from July 2008-January 2011 (42 navigated, 67 controls). We evaluated proportions of women treated within 30 and 60 days of diagnosis and overall time to treatment. Women were navigated by locally trained navigators, or non-navigated. Kaplan-Meier, Cox proportional hazards and logistic regression models were used to determine group differences. Results: A higher percentage of navigated subjects initiated treatment within 30 days (66.7% versus 56.7%, p=0.045) and 60 days (97.8% versus 78.4%, p=0.021). Overall navigated women experienced shorter time to treatment initiation (HR=1.60, p=0.000). These results were independent of stage at diagnosis, cancer clinic and participant characteristics. Five navigator activities were associated with faster treatment times: accompaniment (p=0.006), transportation arrangements (p=0.013), patient telephone support (generally emotional support, p=0.034), patient-family telephone support (p=0.030), and Spanish-English language translation services (p=0.002). Conclusions: Patient-centered navigation to assist Latina women with breast cancer diagnoses increases the proportion of women beginning treatment within 30 and 60 days of diagnosis and significantly reduces overall time from diagnosis to treatment. Improvement appears to be associated with specific navigator activities. Citation Format: Amelie G. Ramirez, Eliseo J. Perez-Stable, Frank Penedo, Gregory A. Talavera, J. Emilio Carillo, Maria F. Fernandez, Alan E.C. Holden, Edgar Munoz, Kipling Gallion. Reducing time-to-treatment in underserved Latinas with breast cancer: The Six Cities Study. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C54. doi:10.1158/1538-7755.DISP13-C54</jats:p

Abstract 5046: What do they do? Patient navigator actions and timely treatment within 30 days of diagnosis in Latinas with breast cancer: The Six Cities Study

Abstract Background: Breast cancer is the leading cause of cancer deaths in Latinas, primarily due to screening and treatment disparities. Patient navigation has emerged as an effective means to reduce these disparities, although how this is achieved is insufficiently documented. Methods: We analyzed navigator logs of activities conducted on behalf of 42 navigated Latinas diagnosed with breast cancer from July 2008-January 2011. Women were navigated by locally trained navigators who resolved patient-reported barriers using one of 10 specific actions: referral, accompaniment, transportation, telephone support, records assistance, health education, appointment reminders, family support, translation services, or health care system intervention. We calculated the frequency of patient-reported barriers to cancer treatment, their association with navigator actions (correlation), and the association of these actions on time to primary treatment initiation within 30 days of confirmed diagnosis (Chi-squared analysis). Results: Patients reported 323 potential barriers to care between diagnosis and initial treatment. Translation (44.3%), specific or generalized fear (14.9%), and transportation (6.5%) were the most commonly reported barriers. Barriers were resolved utilizing activities defined above as determined by navigators; some barriers were resolved with as few as one action. Correspondence (correlation) between reported barriers and navigator actions was high (r=0.985 to r=1.000). Five navigator actions were associated with earlier treatment relative to navigated women not utilizing these specific services (accompaniment: p=.006; transportation: p=.007; telephone support: p=.034; family support: p=.030; translation services: p=.004). Conclusions: Specific patient navigation activities significantly increase the proportion of Latinas with breast cancer women who begin treatment within 30 days of diagnosis. It likely results in reduction of mortality in this group. Citation Format: Amelie G. Ramirez, Eliseo J. Perez-Stable, Gregory A. Talavera, Frank Penedo, Emilio J. Carrillo, Maria E. Fernandez, Alan E. Holden, Edgar Munoz, Kipling J. Gallion. What do they do? Patient navigator actions and timely treatment within 30 days of diagnosis in Latinas with breast cancer: The Six Cities Study. [abstract]. In: Proceedings of the 105th Annual Meeting of the American Association for Cancer Research; 2014 Apr 5-9; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2014;74(19 Suppl):Abstract nr 5046. doi:10.1158/1538-7445.AM2014-5046</jats:p

To Share or Not to Share? A Survey of Biomedical Researchers in the U.S. Southwest, an Ethnically Diverse Region

<div><p>Background</p><p>Cancer health disparities research depends on access to biospecimens from diverse racial/ethnic populations. This multimethodological study, using mixed methods for quantitative and qualitative analysis of survey results, assessed barriers, concerns, and practices for sharing biospecimens/data among researchers working with biospecimens from minority populations in a 5 state region of the United States (Arizona, Colorado, New Mexico, Oklahoma, and Texas). The ultimate goals of this research were to understand data sharing barriers among biomedical researchers; guide strategies to increase participation in biospecimen research; and strengthen collaborative opportunities among researchers.</p><p>Methods and Population</p><p>Email invitations to anonymous participants (n = 605 individuals identified by the NIH RePORT database), resulted in 112 responses. The survey assessed demographics, specimen collection data, and attitudes about virtual biorepositories. Respondents were primarily principal investigators at PhD granting institutions (91.1%) conducting basic (62.3%) research; most were non-Hispanic White (63.4%) and men (60.6%). The low response rate limited the statistical power of the analyses, further the number of respondents for each survey question was variable.</p><p>Results</p><p>Findings from this study identified barriers to biospecimen research, including lack of access to sufficient biospecimens, and limited availability of diverse tissue samples. Many of these barriers can be attributed to poor annotation of biospecimens, and researchers’ unwillingness to share existing collections. Addressing these barriers to accessing biospecimens is essential to combating cancer in general and cancer health disparities in particular. This study confirmed researchers’ willingness to participate in a virtual biorepository (n = 50 respondents agreed). However, researchers in this region listed clear specifications for establishing and using such a biorepository: specifications related to standardized procedures, funding, and protections of human subjects and intellectual property. The results help guide strategies to increase data sharing behaviors and to increase participation of researchers with multiethnic biospecimen collections in collaborative research endeavors</p><p>Conclusions</p><p>Data sharing by researchers is essential to leveraging knowledge and resources needed for the advancement of research on cancer health disparities. Although U.S. funding entities have guidelines for data and resource sharing, future efforts should address researcher preferences in order to promote collaboration to address cancer health disparities.</p></div

Abstract A68: What do they do? The art and science of patient navigation among underserved Latina minorities: The significance of language

Abstract Background: Patient Navigation has evolved to reduce cancer health disparities by eliminating barriers to diagnosis, treatment, and survivorship services. Attempts have been made to describe barriers to care and navigator actions. Little attention has been paid to the unique needs of underserved minorities. Here we describe barriers to care reported by Latina survivors in the context of a social-ecological framework, actions taken by navigators to resolve those barriers, and the consequences of those activities. Methods: We evaluated 399 barriers to care reported by Latinas diagnosed with cancer as part of Redes En Acción: The National Latino Cancer Research Network from July 2008-January 2011. Navigators maintained monthly logs of encounters with patients and recorded reported barriers to care and actions taken to overcome each barrier. Spearman Correlation, Chi-squared analysis and Cox proportional hazards models were used to assess the barriers and actions. Results: The most common barrier to care was needed Spanish-English translation (55.6%). Personal (e.g. fear) and system barriers (e.g. insurance) accounted for the remainder. 85% of all Latinas reported one or more barriers; 37% reported more than one. Multiple (2+) barriers resulted in slightly longer time to treatment (aHR [adjusted Hazard Ratio]= 0.871; p < .05). However this disappeared when barriers were tallied without translation (aHR=0.964; p=.982). Many barriers not specifically reported to be language-based in nature were resolved by providing translation services in the social-ecological context of the reported problem. This was reflected in significant correlation between patient-reported barriers involving Health Education, Insurance issues, Fear, and Beliefs and navigator actions regarding translation services (all p < .05). For example, of 70 instances of “fear” reported as a barrier to care, 12 (17.1%) were resolved with a translation action. Conclusions: Barriers reported by Latinas are predominantly linguistic in nature. Multiple barriers appear to result in a delay between diagnosis and treatment initiation; however this effect disappears when accounting for the effects of a language barrier. Health care systems must attend to the special needs of underserved minorities when planning and improving programs. Citation Format: Amelie G. Ramirez, Eliseo J. Perez-Stable, Frank Penedo, Gregory A. Talavera, J. Emilio Carrillo, Maria Fernandez, Alan E. C. Holden, Edgar Munoz, Sandra San Miguel, Kipling Gallion. What do they do? The art and science of patient navigation among underserved Latina minorities: The significance of language. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A68