Addressing Barriers and Facilitators to African Americans' and Hispanics' Participation in Clinical and Genomic Research Through a Bioethical Sensitive Video.

Research advances on effective methods to prevent, diagnose, and treat cancer continue to emerge through clinical and genomic research. Most clinical trial and genomic research participants identify as White which limits the generalizability of research findings to non-White populations. With the development and access to technology, digital delivery of salient and tailored health education may provide innovative pathways to increase representation of African Americans (AA) and Hispanics in research. This project focused on the creation of a bioethical sensitive education video aimed at increasing participation in clinical trials and genomic research by bringing together experts from the community, healthcare, biomedical research, and public health. The goal was to utilize existing educational resources to create a tailored message to address AA/Hispanics' beliefs, values, and bioethical concerns related to participation in clinical and genomic research. Models of behavior change and communication theories were leveraged to frame key components of the message, which then informed the framework for the animated video. Development of the video consisted of six iterative phases: 1) writing sessions; 2) storyboarding; 3) animating; 4) screening/revisions; 5) acceptability testing; 6) finalization. The final animated video is approximately 5 min in length and covers several topics including the goal of clinical research, disparities in research participation, bioethical concerns, and genomic research regulations. Increasing AA and Hispanic participation in clinical and genomic research is imperative to achieving health equity. Tailored messages via short videos may assist in addressing the barriers and facilitators towards research participation and increase intentions to enroll in trials.

Unmet Needs in Oncology Clinical Research and Treatment in Africa: Focus on Ghana.

Cancer incidence is increasing worldwide and is a major cause of mortality. The relative magnitude of the increase is remarkably high in low human development index (HDI; 95%) and medium HDI (64%) countries. On the African continent, a corresponding increase in cancer burden is predicted, particularly for sub-Saharan Africa. Current epidemiologic data indicate that mortality rates of certain cancers, such as breast and cervical cancers, in sub-Saharan Africa are the highest in the world, and the cancer risks are broadly comparable to the risks in high-income countries, such as the United States and Europe. Although emerging data alludes to the unique genetic profile of cancer in African populations, most cancer therapies are introduced to Africa without confirmatory clinical trials. Therefore, there is an increasing need for clinical trials directed toward prevention, screening, diagnosis, and identification of innovative treatments in the African context. This review will discuss the increasing cancer burden in Africa, with a particular focus on Ghana, unmet clinical needs in cancer, current medical systems, clinical trial regulatory systems, and challenges to clinical trial recruitment.

Factors Influencing Help-Seeking Behavior in Men with Symptoms of Prostate Cancer: A Qualitative Study Using an Ecological Perspective.

This qualitative study explored factors that could potentially influence help-seeking in men with symptoms of prostate cancer in Nigeria. A face-to-face interview was conducted with 27 men, between 54 and 84 years, diagnosed with prostate cancer ≤ 2 years prior to the interview. Data were analyzed using thematic framework approach. Several factors were identified and further captured as intrapersonal, interpersonal, and institutional/community level factors using an ecological perspective. These factors interact to impact negatively on the help-seeking behavior of men with symptoms of prostate cancer. These findings support the formulation of public health strategies to improve men's help-seeking behavior in Nigeria.

American Cancer Society prostate cancer survivorship care guidelines.

Prostate cancer survivors approach 2.8 million in number and represent 1 in 5 of all cancer survivors in the United States. While guidelines exist for timely treatment and surveillance for recurrent disease, there is limited availability of guidelines that facilitate the provision of posttreatment clinical follow-up care to address the myriad of long-term and late effects that survivors may face. Based on recommendations set forth by a National Cancer Survivorship Resource Center expert panel, the American Cancer Society developed clinical follow-up care guidelines to facilitate the provision of posttreatment care by primary care clinicians. These guidelines were developed using a combined approach of evidence synthesis and expert consensus. Existing guidelines for health promotion, surveillance, and screening for second primary cancers were referenced when available. To promote comprehensive follow-up care and optimal health and quality of life for the posttreatment survivor, the guidelines address health promotion, surveillance for prostate cancer recurrence, screening for second primary cancers, long-term and late effects assessment and management, psychosocial issues, and care coordination among the oncology team, primary care clinicians, and nononcology specialists. A key challenge to the development of these guidelines was the limited availability of published evidence for management of prostate cancer survivors after treatment. Much of the evidence relies on studies with small sample sizes and retrospective analyses of facility-specific and population databases.

Predictors of genetic beliefs toward cancer risk perceptions among adults in the United States: Implications for prevention or early detection.

The objective of this study is to assess predictors of genetic beliefs toward cancer risk perceptions among adults, aged 18 years and over, in the United States (US). Data were obtained from the National Cancer Institute's (NCI) Health Information National Trends Survey 2014 (HINTS) 4 Cycle 4. Bivariate and multivariable logistic regression analyses were conducted to assess factors associated with an individual's beliefs about genetic and cancer risk perceptions. The results showed that African Americans, Non-White Hispanics, Non-Hispanic Asians, individuals with a high school education or less, and annual household incomes less than $20,000 and do not believe that health behaviors play some role in determining whether a person will develop cancer was significantly less likely to report that genetics plays at least some role in whether a person will develop cancer. Findings of this study provide an opportunity for genetic counselors to address beliefs about genetics and cancer risk perceptions among minority populations and promote health equity.

Racial Disparities in HPV-related Knowledge, Attitudes, and Beliefs Among African American and White Women in the USA.

The objective of this study was to assess the differences in HPV-related knowledge, attitudes, and beliefs among African American and non-Hispanic white women and to determine their communication preferences for cancer-related information. Data was obtained from the National Cancer Institute's (NCI) 2014 Health Interview National Trends Survey (HINTS), a cross-sectional survey of US adults 18 years of age or older. Descriptive statistics, bivariate, and multivariate logistic regression were used to identify differences in awareness and knowledge. Data was collected in 2014 and analyzed in 2016. HPV awareness (71 vs. 77%) and knowledge that HPV causes cervical cancer (64 vs. 81%) were significantly lower among blacks. Additionally, there were significant disparities in awareness of the HPV vaccine (66 vs. 79%), with only 25% of Black women indicating that they or a family member was recommended the HPV vaccine by a health care professional. There were also differences in cancer communication preferences. Blacks were more likely than Whites to trust cancer information from family (OR 2.7, confidence interval [CI] 0.725-10.048), television (OR 3.0, 95% [CI] 0.733-12.296), government health agencies (OR 5.8, [CI] 0.639-52.818), and religious organizations (OR 6.4, 95% [CI] 1.718-23.932). Study results indicate that racial/ethnic differences exist in HPV knowledge/awareness and cancer communication preferences. These results highlight the need to increase HPV prevention and education efforts using methods that are tailored to Black women. To address HPV/cervical cancer disparities, future interventions should utilize preferred communication outlets to effectively increase HPV knowledge and vaccine awareness.

Opportunities and challenges of using technology to address health disparities.

During a panel presentation at the American Association for Cancer Research Cancer Health Disparities Conference titled 'Opportunities and challenges of using technology to address health disparities', the latest scientific advances in the application and utilization of mobile technology and/or mobile-health (mHealth) interventions to address cancer health disparities were discussed. The session included: an examination of overall population trends in the uptake of technology and the potential of addressing health disparities through such media; an exploration of the conceptual issues and challenges in the construction of mHealth interventions to address disparate and underserved populations; and a presentation of pilot study findings on the acceptability and feasibility of using mHealth interventions to address prostate cancer disparities among African-American men.

The complex interplay of modifiable risk factors affecting prostate cancer disparities in African American men.

Prostate cancer is the second most commonly diagnosed non-skin malignancy and the second leading cause of cancer death among men in the USA. However, the mortality rate of African American men aged 40-60 years is almost 2.5-fold greater than that of European American men. Despite screening and diagnostic and therapeutic advances, disparities in prostate cancer incidence and outcomes remain prevalent. The reasons that lead to this disparity in outcomes are complex and multifactorial. Established non-modifiable risk factors such as age and genetic predisposition contribute to this disparity; however, evidence suggests that modifiable risk factors (including social determinants of health, diet, steroid hormones, environment and lack of diversity in enrolment in clinical trials) are prominent contributing factors to the racial disparities observed. Disparities involved in the diagnosis, treatment and survival of African American men with prostate cancer have also been correlated with low socioeconomic status, education and lack of access to health care. The effects and complex interactions of prostate cancer modifiable risk factors are important considerations for mitigating the incidence and outcomes of this disease in African American men.

Addressing disparities in cancer clinical trials: a roadmap to more equitable accrual.

The Georgia Center for Oncology Research and Education (Georgia CORE) and the Georgia Society of Clinical Oncology (GASCO) held a one-day summit exploring opportunities and evidence-based interventions to address disparities in cancer clinical trials. The purpose of the summit was to identify clear and concise recommendations aimed at decreasing clinical trial accrual disparities in Georgia for rural and minority populations. The summit included expert presentations, panel discussions with leaders from provider organizations throughout Georgia, and breakout sessions to allow participants to critically discuss the information presented. Over 120 participants attended the summit. Recognizing the need for evidence-based interventions to improve clinical trial accrual among rural Georgians and persons of color, summit participants identified four key areas of focus that included: improving clinical trial design, providing navigation for all, enhancing public education and awareness of cancer clinical trials, and identifying potential policy and other opportunities. A comprehensive list of takeaways and action plans was developed in the four key areas of focus with the expectation that implementation of the strategies that emerged from the summit will enhance cancer clinical trial accrual for all Georgians.

Establishing the infrastructure to conduct comparative effectiveness research toward the elimination of disparities: a community-based participatory research framework.

In Tampa, Florida, researchers have partnered with community- and faith-based organizations to create the Comparative Effectiveness Research for Eliminating Disparities (CERED) infrastructure. Grounded in community-based participatory research, CERED acts on multiple levels of society to enhance informed decision making (IDM) of prostate cancer screening among Black men. CERED investigators combined both comparative effectiveness research and community-based participatory research to design a trial examining the effectiveness of community health workers and a digitally enhanced patient decision aid to support IDM in community settings as compared with "usual care" for prostate cancer screening. In addition, CERED researchers synthesized evidence through the development of systematic literature reviews analyzing the effectiveness of community health workers in changing knowledge, attitudes and behaviors of African American adults toward cancer prevention and education. An additional systematic review analyzed chemoprevention agents for prostate cancer as an emerging technique. Both of these reviews, and the comparative effectiveness trial supporting the IDM process, add to CERED's goal of providing evidence to eliminate cancer health disparities.

The men's health forum: an initiative to address health disparities in the community.

Racial/ethnic, socioeconomic, and gender disparities in health and access to and use of health care services currently exist. Health professionals are continually striving to reduce and eliminate health disparities within their own community. One such effort in the area of Tampa Bay, Florida was the creation of the African American Men's Health Forum, currently referred to as the Men's Health Forum. The African American Men's Health Forum was the result of the community's desire to reduce the gap in health outcomes for African American men. Later, it was recognized that the gap in health outcomes impacts other communities; therefore, it was broadened to include all men considered medically underserved (those who are uninsured, underinsured, or without a regular health care provider). The Men's Health Forum empowers men with the resources, knowledge, and information to effectively manage their health by providing health education and screenings to the community. This article provides an explanation of the key components that have contributed to the success of the Men's Health Forum, including challenges and lessons learned. It is intended that this information be replicated in other communities in an effort to eliminate health disparities.

Survivorship care planning in colorectal cancer: feedback from survivors & providers.

The Institute of Medicine recommended that all patients receive survivorship care plans (SCPs) post-treatment to improve quality of follow-up care. However, little is known regarding how survivors utilize SCPs and the congruency between providers' and survivors' perspectives. Feedback from colorectal cancer survivors (in receipt of a personalized/individualized SCP) and oncology providers was obtained via interviews. Survivors noted SCPs benefits of reduced duplicative procedures and cancer worry with the synthesized treatment information. Providers noted billing/reimbursement and time investiture (for form completion) as potential barriers. Further investigation of SCPs is warranted regarding utility prior to widespread adoption in follow-up care.

Understanding the psychosocial issues of African American couples surviving prostate cancer.

African Americans are disproportionately affected by prostate cancer, yet less is known about the most salient psychosocial dimensions of quality of life. The purpose of this study was to explore the perceptions of African American prostate cancer survivors and their spouses of psychosocial issues related to quality of life. Twelve African American couples were recruited from a National Cancer Institute Comprehensive Cancer Center registry and a state-based non-profit organization to participate in individual interviews. The study was theoretically based on Ferrell's Quality of Life Conceptual Model. Common themes emerged regarding the psychosocial needs of African American couples. These themes were categorized into behavioral, social, psychological, and spiritual domains. Divergent perspectives were identified between male prostate cancer survivors and their female spouses. This study delineated unmet needs and areas for future in-depth investigations into psychosocial issues. The differing perspectives between patients and their spouses highlight the need for couple-centered interventions.

Cancer healthcare disparities among African Americans in the United States.

A need exists to examine racial disparities in the healthcare arena and the impact on patients with cancer. Despite ongoing efforts to increase equity in primary healthcare access, racial and socioeconomic disparities persist, thus contributing to disproportionate treatment outcomes and survivorship among minority and low-income patients. Such disparities have been revealed in treatment cohorts of patients with multiple forms of cancer, including breast, cervical, ovarian, endometrial, prostate, lung, colorectal, gastrointestinal, and hepatocellular, and have been attributed to a range of co-occurring behavioral, social determinants of health, underlying genetic factors, as well as access to educational opportunities that limit the quality of informed healthcare. These various interrelated factors widen cancer healthcare disparities synergistically throughout underserved communities, and their influence has been amplified by the coronavirus disease 2019 (COVID-19) pandemic. Fundamentally, a lack of basic and clinical research exists that fails to adequately reflect diversity and minority involvement in drug development. Although overcoming the obstacles responsible for chronic treatment disparities is a formidable task, promising means of achieving more uniform quality healthcare are becoming more clearly elucidated. To reduce disease progression, increase overall survival, and improve the health of vulnerable populations, it is necessary to identify and fully disclose environmental, biological, and ancestral factors that impact the risk for cancer; heal historical fractures within communities; and increase participation of racial and ethnic minorities in screening efforts and research studies. This requires developing a system of justice and trust based on specific, solution-oriented grassroots community efforts working in tandem with medical and pharmaceutical leaders. By fully exploring and pinpointing the underlying causes of healthcare disparities, it should be possible to define strategies and interventions most likely to transform cancer care. The ultimate goal is understanding individual, cultural, and biological vulnerabilities, including environmental and epigenetic liabilities, to optimize cancer prevention, diagnosis, and treatment.

Psychosocial issues related to sexual functioning among African-American prostate cancer survivors and their spouses.

OBJECTIVE: Focus on cancer survivorship and quality of life (QOL) is a growing priority. The aim of this study was to identify and describe the most salient psychosocial concerns related to sexual functioning among African-American (AA) prostate cancer survivors and their spouses. METHODS: Twelve AA prostate cancer survivors and their spouses participated in semi-structured individual interviews. The interviews assessed couples' experiences with psychosocial adjustment and sexual functioning posttreatment for localized prostate cancer. The data were analyzed using the constant comparison method and content analysis. RESULTS: In this qualitative study of couples surviving prostate cancer, there were divergent views between the male prostate cancer survivors and their female partners, particularly regarding sexual functioning. For the males, QOL issues emerged as the primary area of concern, whereas survival of their husbands was considered most important among the female spouses. The male respondents expressed unease with the sexual side effects of their cancer treatment, such as erectile dysfunction and decreased sexual desire and satisfaction. Female spouses recognized decreased sexual desire in their partners following treatment, but this was not considered a primary concern. CONCLUSIONS: Patients and their spouses may have differing perceptions regarding QOL and the impact of sexual functioning on survivorship. This study points to the need for further research and intervention development to address these domains with a goal to improve QOL.

The Research Centers in Minority Institutions (RCMI) Consortium: A Blueprint for Inclusive Excellence.

The Research Centers in Minority Institutions, (RCMI) Program was established by Congress to address the health research and training needs of minority populations, by preparing future generations of scientists at these institutions, with a track record of producing minority scholars in medicine, science, and technology. The RCMI Consortium consists of the RCMI Specialized Centers and a Coordinating Center (CC). The RCMI-CC leverages the scientific expertise, technologies, and innovations of RCMI Centers to accelerate the delivery of solutions to address health disparities in communities that are most impacted. There is increasing recognition that the gap in representation of racial/ethnic groups and women is perpetuated by institutional cultures lacking inclusion and equity. The objective of this work is to provide a framework for inclusive excellence by developing a systematic evaluation process with common data elements that can track the inter-linked goals of workforce diversity and health equity. At its core, the RCMI Program embodies the trinity of diversity, equity, and inclusion. We propose a realist evaluation framework and a logic model that integrates the institutional context to develop common data metrics for inclusive excellence. The RCMI-CC will collaborate with NIH-funded institutions and research consortia to disseminate and scale this model.

Strengthening and Sustaining Inter-Institutional Research Collaborations and Partnerships.

Inter-institutional collaborations and partnerships play fundamental roles in developing and diversifying the basic biomedical, behavioral, and clinical research enterprise at resource-limited, minority-serving institutions. In conjunction with the Research Centers in Minority Institutions (RCMI) Program National Conference in Bethesda, Maryland, in December 2019, a special workshop was convened to summarize current practices and to explore future strategies to strengthen and sustain inter-institutional collaborations and partnerships with research-intensive majority-serving institutions. Representative examples of current inter-institutional collaborations at RCMI grantee institutions are presented. Practical approaches used to leverage institutional resources through collaborations and partnerships within regional and national network programs are summarized. Challenges and opportunities related to such collaborations are provided.

Barbers against prostate cancer: a feasibility study for training barbers to deliver prostate cancer education in an urban African American community.

The goal of this pilot study was to assess the feasibility of training barbers to deliver a brief culturally and literacy appropriate prostate cancer educational intervention to urban African American men. Eight barbers received training to deliver a 2-month educational intervention in the barbershop and completed pre- and posttest training assessments. The training workshops led to a significant increase in mean prostate cancer knowledge scores among the barbers (60% before vs. 79% after; P < 0.05). The barbers also reported positively on the intervention in terms of satisfaction and relative ease of engaging clients. Training barbers to deliver a prostate cancer educational intervention is a feasible strategy for raising prostate cancer awareness of the disease among a priority population.