A culturally informed model to enhance breast, cervical, and colorectal cancer screenings: perspectives of American Indian adults and healthcare providers in rural New Mexico.

PURPOSE: American Indian/Alaska Native (AI/AN) populations have some of the lowest cancer screening rates compared to other racial/ethnic populations. Using community-based participatory research methods, we sought to characterize knowledge, attitudes, beliefs, and approaches to enhance breast, colorectal, and cervical cancer screening. METHODS: We conducted 12 focus groups between October 2018 and September 2019 with 96 eligible AI adults and healthcare providers, recruited using non-probability purposive sampling methods from the Zuni Pueblo in rural New Mexico. We used the Multi-level Health Outcomes Framework (MHOF) to conduct a qualitative content analysis identifying mutable systems- and individual- level constructs important for behavior change that we crosslinked with the Community Preventive Services Task Force (CPSTF) recommended evidence-based interventions (EBIs) or approaches. RESULTS: Salient systems-level factors that limited uptake of cancer screenings included inflexible clinic hours, transportation barriers, no on-demand service and reminder systems, and brief doctor-patient encounters. Individual-level barriers included variable cancer-specific knowledge that translated into fatalistic beliefs, fear, and denial. Interventions to enhance community demand and access for screening should include one-on-one and group education, small media, mailed screening tests, and home visitations by public health nurses. Interventions to enhance provider delivery of screening services should include translation and case management services. CONCLUSIONS: The MHOF constructs crosslinked with CPSTF recommended EBIs or approaches provided a unique perspective to frame barriers and promoters of screening utilization and insights for intervention development. Findings inform the development of culturally tailored, theoretically informed, multi-component interventions concordant with CPSTF recommended EBIs or approaches aimed at improving cancer screening.

A patient-centered comparative effectiveness research study of culturally appropriate options for diabetes self-management.

This project compared the effectiveness of two evidence-based models of culturally competent diabetes health promotion: The Diabetes Self-Management Support Empowerment Model (DSMS), and The Chronic Care Model (CCM). Our primary outcome was improvement in patient capacity for diabetes self-management as measured by the Diabetes Knowledge Questionnaire (DKQ) and the Patient Activation Measure (PAM). Our secondary outcome was patient success at diabetes self-management as measured by improvement in A1c, depression sores using the PHQ-9, and Body Mass Index (BMI). We also gathered data on the cultural competence of the program using the Consumer Assessment of Healthcare Providers and Systems Cultural Competence Set (CAHPS-CC). We compared patient outcomes in two existing sites in Albuquerque, New Mexico that serve a large population of Latino diabetes patients from low-income households. Participants were enrolled as dyads-a patient participant (n=226) and a social support participant (n=226). Outcomes over time and by program were analyzed using longitudinal linear mixed modeling, adjusted for patient participant demographic characteristics and other potential confounding covariates. Secondary outcomes were also adjusted for potential confounders. Interactions with both time and program helped to assess outcomes. This study did not find a difference between the two sites with respect to the primary outcome measures and only one of the three secondary outcomes showed differential results. The main difference between programs was that depression decreased more for CCM than for DSMS. An exploratory, subgroup analysis revealed that at CCM, patient participants with a very high A1c (>10) demonstrated a clinically meaningful decrease. However, given the higher cultural competence rating for the CCM, statistically significant improvement in depression, and the importance of social support to the patients, results suggest that a culturally and contextually situated diabetes self-management and education program design may deliver benefit for patients, especially for patients with higher A1c levels.

Colorectal Cancer Screening Among Adults in Zuni Pueblo: Factors Associated with FOBT and Colonoscopy Utilization.

Although strategies to mitigate barriers to colorectal cancer (CRC) screening have proven successful in some parts of the US, few of these strategies have been studied in rural, American Indian communities that may exhibit unique culturally driven attitudes toward and knowledge of colorectal cancer and experience increased barriers to healthcare access. In this study, we describe the results of a survey among CRC screen-eligible members of Zuni Pueblo (N = 218) on an array of questions regarding CRC screening behaviors, knowledge, satisfaction with and access to healthcare services, social support for CRC screening, perceptions toward FOBT, and preference for evidence-based interventions or strategies for improving CRC screening rates. Results from the multivariable model suggest age, having a regular healthcare provider, and harboring fewer negative perceptions toward FOBT are key drivers of ever completing CRC screening. Respondents reported strong support for Community Guide-recommended interventions and strategies for increasing CRC screening for nearly all proposed interventions. Results confirm the need for multilevel, multicomponent interventions, with a particular focus on improving Zuni Pueblo community members' access to a regular source of care, improving knowledge of CRC risk factor, and addressing negative perceptions toward CRC screening. These results provide critical, community-specific insight into better understanding the drivers of low guideline-adherent screening rates and inform local healthcare providers and community leaders of context-specific strategies to improve CRC screening in Zuni Pueblo.

A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research.

IMPORTANCE: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. OBSERVATIONS: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. CONCLUSIONS AND RELEVANCE: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation.

Financial Hardship and Health Related Quality of Life Among Older Latinos With Chronic Diseases.

BACKGROUND: Financial hardship influences health-related quality of life (HRQoL) of older adults. However, little is known about the relationship between financial hardship and HRQoL among vulnerable populations. OBJECTIVE: We examined the associations between financial hardship and HRQoL among older Latinos living with chronic disease, including cancer. METHODS: This cross-sectional study included 68 Latinos (age range 50-87) with one or more chronic health conditions who participated in a pilot randomized clinical trial. Participants responded to 11 financial hardship questions. We used factor analysis to explore constructs of financial hardship. HRQoL was assessed using the 27-item Functional Assessment of Cancer Therapy-General (FACT-G). Multiple linear regression examined the associations between financial hardship and HRQoL subscales (physical, social/family, emotional, functional well-being). RESULTS: The factor analysis revealed 3 constructs of financial hardship: medical cost concerns, financial hardship treatment adherence, and financial worry. A 1-point increase in the factor score for financial hardship treatment adherence was associated with a 2.1-point (SE = 0.771) decrease in physical well-being and with a 1.71-point (SE = 0.761) decrease in functional well-being. A 1-point increase in the financial stress factor score was associated with a 2.0-point (SE = 0.833) decrease in social/family well-being, and with a 2.1-point (SE = 0.822) decrease in functional well-being. CONCLUSION: In this study of older Latinos with chronic diseases, financial hardship was associated with worse HRQoL across several domains. Healthcare providers should refer older Latinos living with chronic disease to appropriate support providers, such as care coordinators, social workers, or patient navigators, who can assist them with obtaining financial assistance and other resources.

Building Capacity for Productive Indigenous Community-University Partnerships.

This paper describes capacity development as a key aspect of community-based research with indigenous communities. University research engagement with indigenous communities includes extensive, and often negative, historical antecedents. We discuss strategies for developing effective, egalitarian, and balanced indigenous community-university relationships to build research capacity of these communities, and to create sustainable partnerships to improve health and wellness, and to reduce health disparities. We draw on the experience of eight investigators conducting research with indigenous communities to assess effective strategies for building and enhancing partnerships, including (1) supporting indigenous investigator development; (2) developing university policies and practices sensitive and responsive to Indigenous community settings and resources, and training for research; (3) developing community and scientifically acceptable research designs and practices; (4) aligning indigenous community and university review boards to enhance community as well as individual protection (e.g., new human subjects training for Indigenous research, joint research oversight, adaptation of shorter consent forms, appropriate incentives, etc.); (5) determining appropriate forms of dissemination (i.e., Indian Health Services provider presentation, community reports, digital stories, etc.); (6) best practices for sharing credit; and (7) reducing systematic discrimination in promotion and tenure of indigenous investigators and allies working in indigenous communities.

Healthcare Providers' Attitudes, Knowledge, and Practice Behaviors for Educating Patients About Advance Directives: A National Survey.

BACKGROUND:: Advance care planning for end-of-life care emerged in the mid-1970's to address the need for tools, such as the advance directive (AD) legal document, to guide medical decision-making among seriously ill patients, their families, and healthcare providers. OBJECTIVE:: Study aims examine providers' perspectives on AD education that involve examining (1) a range of attitudes about educating patients, (2) whether prior knowledge was associated with practice behaviors in educating patients, and (3) specific factors among healthcare providers such as characteristics of work setting, knowledge, attitudes, and behaviors that may influence AD education and documentation. DESIGN:: To examine providers' views, we conducted a cross-sectional, online survey questionnaire of healthcare providers using social media outreach methods for recruitment. METHODS:: This study used a cross-sectional survey design to examine the proposed aims. Healthcare providers, recruited through a broad approach using snowball methods, were invited to participate in an online survey. Logistic regression analyses were used to examine providers' views toward AD education. RESULTS:: Of 520 participants, findings indicate that most healthcare providers said that they were knowledgeable about AD education. They also viewed providing education as beneficial to their practice. These findings suggest that having a positive attitude toward AD education and experiencing less organizational barriers indicate a higher likelihood that providers will educate patients regarding ADs. CONCLUSION:: Various disciplines are represented in this study, which indicates that attitudes and knowledge influence AD discussions. The importance of AD discussions initiated by healthcare providers is critical to providing optimal patient-centered care.

Racial-Ethnic Disparities in Late-Stage Colorectal Cancer Among Hispanics and Non-Hispanic Whites of New Mexico.

INTRODUCTION: Hispanics in New Mexico are diagnosed with more later-stage colorectal cancer (CRC) than non-Hispanic Whites (NHW). Our study evaluated the interaction of race/ethnicity and risk factors for later-stage III and IV CRC among patients in New Mexico. METHOD: CRC patients ages 30 to 75 years ( n = 163, 46% Hispanic) completed a survey on key explanatory clinical, lifestyle, preventive health, and demographic variables for CRC risk. Adjusted logistic regression models examined whether these variables differentially contributed to later-stage CRC among NHW versus Hispanics. RESULTS: Compared with NHW, Hispanics had a higher prevalence of later-stage CRC ( p = .007), diabetes ( p = .006), high alcohol consumption ( p = .002), low education ( p = .003), and CRC diagnosis due to symptoms ( p = .06). Compared with NHW, Hispanics reporting high alcohol consumption (odds ratio [OR] = 7.59; 95% confidence interval [CI] = 1.31-43.92), lower education (OR = 3.5; 95% CI = 1.28-9.65), being nondiabetic (OR = 3.23; 95% CI = 1.46-7.15), or ever smokers (OR = 2.4; 95% CI = 1.03-5.89) were at higher risk for late-stage CRC. Adjusting for CRC screening did not change the direction or intensity of the odds ratios. CONCLUSION: The ethnicity-risk factor interactions, identified for late-stage CRC, highlight significant factors for targeted intervention strategies aimed at reducing the burden of later-stage CRC among Hispanics in New Mexico with broad applicability to other Hispanic populations.

An Integrated Approach to Diabetes Prevention: Anthropology, Public Health, and Community Engagement.

Diabetes is an enormous public health problem with particular concern within Hispanic communities and among individuals with low wealth. However, attempts to expand the public health paradigm to include social determinants of health rarely include analysis of social and contextual factors considered outside the purview of health research. As a result, conceptualization of the dynamics of diabetes health disparities remains shallow. We argue that using a holistic anthropological lens has the potential to offer insights regarding the nature of the interface between broader social determinants, health outcomes and health disparity. In a primarily Hispanic, immigrant community in Albuquerque, New Mexico, we conducted a mixed methods study that integrates an anthropological lens with a community engaged research design. Our data from focus groups, interviews, a survey and blood sampling demonstrate the need to conceptualize social determinants more broadly, more affectively and more dynamically than often considered. These results highlight a need to include, in addition to individual-level factors that are traditionally the focus of public health and more innovative structural factors that are currently in vogue, an in-depth, qualitative exploration of local context, social environment, and culture, and their interactions and intersectionality, as key factors when considering how to achieve change. The discussion presented here offers a model for culturally situated and contextually relevant scientific research. This model achieves the objectives and goals of both public health and anthropology while providing valuable insights and mechanisms for addressing health disparity such as that which exists in relation to diabetes among Hispanic immigrants in New Mexico. Such an approach has implications for how research projects are designed and conceptualizing social determinants more broadly. The discussion presented provides insights with relevance for both disciplines.

Social determinants of breast cancer screening in urban primary care practices: a community-engaged formative study.

BACKGROUND: The recent decline in the breast cancer mortality rate can be attributed to intensive screening and early detection efforts. However, studies have documented a decline in self-reported recent mammography use and interventions to enhance mammography utilization have yielded modest improvements. To address the root causes of breast cancer disparities and improve mammography use, interventions need to address multiple layers of patient, provider, and health system factors. OBJECTIVE: Using community-based participatory research principles, we sought to learn from women receiving care through urban primary care practices about issues surrounding mammography screening and strategies to increase screening. METHODS: We conducted five focus groups among 41 eligible women who were predominantly African American, recruited using nonprobability purposive sampling methods from urban community health centers in Baltimore, Maryland. Data are reported from three focus groups (n = 28) that provided usable data. We used the social determinants of health perspective to conduct a qualitative content analysis and interpretation of the data. RESULTS: Major obstacles to obtaining a screening mammogram were individual-level (i.e., pain from the procedure) and structural-level factors (i.e., cost, geography, convenience). Strategies to overcome obstacles could include the creation of structural mechanisms whereby women can receive a host of services during one visit to a healthcare professional's office. Important promoters of screening behavior included social-level factors such as social support, hope, and positive treatment outcomes. CONCLUSION: The social determinants of health perspective provided a unique perspective to frame barriers and promoters of mammography utilization and insights to develop interventions aimed at improving cancer control among women receiving care at urban primary care health centers.

A descriptive analysis of state legislation and policy addressing clinical trials participation.

OBJECTIVES: This report describes state policy and legislation related to clinical trials participation and Maryland's model to enhance clinical trial availability and participation. METHODS: Descriptive review of state policy and legislation related to coverage for clinical trials costs based on data from the National Cancer Institute (NCI) State Cancer Legislative Database, the American Cancer Society, and NCI; additionally, discussion of Maryland's comprehensive multilevel clinical trial model comprising policy initiatives, community engagement, research, education, and infrastructure support. RESULTS: Twenty-four states have mandated clinical trial coverage through specific legislation or agreements since 1994. Covered benefits varied among the states. CONCLUSIONS: Besides cost and insurance barriers, there is a need to address important patient, physician and researcher, and structural barriers to clinical trial participation. Maryland provides a comprehensive model to address the multi-faceted clinical trial participation determinants as it tracks state and federal policy, documents trial barriers, and conducts community education.

Needs and preferences for receiving mental health information in an African American focus group sample.

The purpose of this study is to better understand the mental health/illness information and service delivery preferences among African American residents of Baltimore. We conducted four focus groups (n = 42) among African American adults currently unconnected with the mental health system. Participants expressed fear of stigma and perceptions of racism as major barriers to seeking information and/or services and discussed some normalizing strategies to address these barriers. African Americans harbor cultural and traditional beliefs regarding mental illness which could also act as barriers. Findings have implications for imparting acceptable and culturally sensitive mental health education and service delivery programs in community settings.

Analysis of Maryland cancer patient participation in national cancer institute-supported cancer treatment clinical trials.

PURPOSE: We examined the relationship of sociodemographic factors, urban/rural residence, and county-level socioeconomic factors on accrual of Maryland patients with cancer to National Cancer Institute (NCI) -sponsored cancer treatment clinical trials. PATIENTS AND METHODS: Data were analyzed for the period 1999 to 2002 for 2,240 Maryland patients with cancer accrued onto NCI-sponsored treatment trials. The extent to which Maryland patients with cancer and patients residing in lower socioeconomic and/or rural areas were accrued to cancer trials and were representative of all patients with cancer in Maryland was determined. Data were obtained from several sources, including NCI's Cancer Therapy Evaluation Program for Maryland patients with cancer in Cooperative Group therapeutic trials, Maryland Cancer Registry data on cancer incidence, and United States Census and the Department of Agriculture. RESULTS: For Maryland patients with cancer accrued onto NCI-sponsored treatment trials between 1999 and 2002, subgroups accrued at a higher rate included pediatric and adolescent age groups, white patients, female patients (for sex-specific tumors), patients with private health insurance, and patients residing in the Maryland National Capitol region. Moreover, between 1999 and 2002, there was an estimated annual decline (8.9% per year; P < .05) in the percentage of black patients accrued onto cancer treatment trials. Logistic regression models uncovered different patterns of accrual for female patients and male patients on county-level socioeconomic factors. CONCLUSION: Results highlight disparities in the accrual of Maryland patients with cancer onto NCI-sponsored treatment trials based on patient age, race/ethnicity, geography of residence, and county-level socioeconomic factors. Findings provide the basis for development of innovative tailored and targeted educational efforts to improve trial accrual, particularly for the underserved.

Breast cancer epidemiology in blacks and whites: disparities in incidence, mortality, survival rates and histology.

BACKGROUND: This study presents black-white breast cancer statistics, tumor histology and receptor status, and treatment patterns for all ages and by age groups (< 40, 40-49, and > or = 50). METHODS: The study used data from the National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) program for the time period 1995-2004. Age-adjusted incidence, mortality, relative survival rates, tumor grade, histology and receptor status, and treatment patterns for invasive breast cancer were calculated for nine SEER cancer registries for 1995-2004. RESULTS: Invasive breast cancer age-adjusted incidence for black women age < 40 was significantly higher than those for white women (rate ratio = 1.16, 95% confidence interval: 1.10-1.23). Age-adjusted mortality rate for black women age < 40 was twice that for white women. Compared to white women, black women were significantly more likely to be diagnosed with regional or distant disease, have lower relative five-year survival rate and have higher likelihood of being diagnosed with tumors with poorer prognosis. Black women were less likely to receive breast cancer surgery as part of the treatment plan. CONCLUSIONS: Race/ethnic disparities in invasive breast cancer epidemiology, prognostic indicators and treatment patterns exist between black and white women. The study findings support the need for innovative research, especially on the multifaceted determinants of the differential epidemiology of breast cancer. Equally important, there is a need for evidence-guided equal delivery of quality care to eliminate breast cancer disparities among black women.

Maryland's Special Populations Network. A model for cancer disparities research, education, and training.

The unequal burden of cancer in minority and underserved communities nationally and in Maryland is a compelling crisis. The Maryland Special Populations Cancer Research Network (MSPN) developed an infrastructure covering Maryland's 23 jurisdictions and Baltimore City through formal partnerships between the University of Maryland School of Medicine, University of Maryland Statewide Health Network, University of Maryland Eastern Shore, and community partners in Baltimore City, rural Eastern Shore, rural Western Maryland, rural Southern Maryland, and Piscataway Conoy Tribe and statewide American Indians. Guided by the community-based participatory framework, the MSPN undertook a comprehensive assessment (of needs, strengths, and resources available) that laid the foundation for programmatic efforts in community-initiated cancer awareness and education, research, and training. The MSPN infrastructure was used to implement successful and innovative community-based cancer education interventions and technological solutions; conduct education and promotion of clinical trials, cancer health disparities research, and minority faculty cancer research career development; and leverage additional resources for sustainability. MSPN engaged in informed advocacy among decision- and policymakers at state and national levels, and its community-based clinical trials program was recognized by the U.S. Department of Health and Human Services as a Best Practice Award. The solutions to reduce and eliminate cancer health disparities are complex and require comprehensive and focused multidisciplinary cancer health disparities research, training, and education strategies implemented through robust community-academic partnerships. Cancer 2006. (c) American Cancer Society.

Recruitment and participation in clinical trials: socio-demographic, rural/urban, and health care access predictors.

BACKGROUND: Recruitment and participation in clinical trials by minorities, particularly African Americans and rural underserved populations, are low. This report examines predictors of clinical trial recruitment and participation for adult Marylanders. METHODS: A cross-sectional design was used to survey 5154 adults (18 years and older) residing in 13 of the 24 jurisdictions in Maryland, including urban Baltimore City, and the rural regions of Western Maryland and the Eastern Shore. The survey, conducted between December 2001 and March 2003, used Computer-Assisted Telephone Interviewing and random-digit dialing procedures. Primary dependent variables included "ever asked to participate" (i.e., recruited) and "participated" in clinical trials. RESULTS: 11.1% of the respondents had been recruited to clinical trials. In addition, 59.4% of the respondents recruited to clinical trials actually participated in a clinical trial. Among respondents recruited to clinical trials, black and middle income respondents were significantly less likely to actually participate in clinical trials; whereas, respondents who received information about clinical trials from their health care provider, who were knowledgeable about clinical trials, and those who had the time commitment were significantly more likely to participate in clinical trials. CONCLUSIONS: These results suggest serious gaps in efforts to recruit racial/ethnic minorities and residents of rural regions into clinical trials. The findings provide the basis for the development and implementation of community-based educational programs for both the general public and health care professionals, and to enhance availability of community-based clinical trials, especially in the rural areas of the state.

Maryland's Special Populations Cancer Network: cancer health disparities reduction model.

Cancer in Maryland is a serious health concern for minority and underserved populations in rural and urban areas. This report describes the National Cancer Institute (NCI) supported Maryland Special Populations Cancer Network (MSPN), a community-academic partnership. The MSPN's priority populations include African Americans, Native Americans, and other medically underserved residents of rural and urban areas. The MSPN has established a community infrastructure through formal collaborations with several community partners located in Baltimore City, the rural Eastern Shore, and Southern and Western Maryland, and among the Piscataway Conoy Tribe and the other 27 Native American Tribes in Maryland. Key partners also include the University of Maryland Eastern Shore and the University of Maryland Statewide Health Network. The MSPN has implemented innovative and successful programs in cancer health disparities research, outreach, and training; clinical trials education, health disparities policy, and resource leveraging. The MSPN addresses the goal of the NCI and the Department of Health and Human Services (DHHS) to reduce and eventually eliminate cancer health disparities. Community-academic partnerships are the foundation of this successful network.

Prevalence and predictors of smoking behavior among Samoans in three geographical regions.

OBJECTIVES: Provide comprehensive data on smoking behavior among Samoans. DESIGN: Cross-sectional, using systematic random sampling procedures, and in-person interviews. SETTING: US Territory of American Samoa, Hawaii, and Los Angeles, California. PARTICIPANTS: 1834 adult, non-institutionalized Samoans. INTERVENTION: None. MAIN OUTCOME MEASURES: Prevalence and independent predictors of smoking. RESULTS: Approximately one fourth (26.6%) of Samoans were current smokers, with 31.4% of men and 22.5% of women currently smoking. More current smokers were found in American Samoa (28.9%), followed by Hawaii (26.9%) and Los Angeles (24.1%, P<.001). At each site, Samoan men compared with the women were significantly more likely to smoke (P<.001), initiate smoking earlier (P<.05), and smoke more cigarettes (P<.05). Cessation rates for the sample were very low. Predictors of smoking included being younger, male, married, less educated, with lower income, and more acculturated. CONCLUSION: The high smoking and low cessation rates indicate that smoking-related diseases will be significant causes of morbidity and mortality for Samoans for many years. The findings further underscore the importance of documenting smoking patterns and their determinants for subgroups rather than aggregates such as Asian American and Pacific Islanders. If Samoans are to meet the Healthy People 2010 tobacco goals, there is a need to: 1) develop tailored tobacco awareness and cessation programs based on the recommendations made by the Taskforce on Community Preventive Services; 2) understand the complex interactions between social, cultural, and psychological determinants of smoking and cessation behaviors; and 3) develop policies to limit availability of tobacco, environmental exposure from tobacco, and increase cessation efforts.