Understanding disruptions in cancer care to reduce increased cancer burden.

Background: This study seeks to understand how and for whom COVID-19 disrupted cancer care to understand the potential for cancer health disparities across the cancer prevention and control continuum. Methods: In this cross-sectional study, participants age 30+residing in an 82-county region in Missouri and Illinois completed an online survey from June-August 2020. Descriptive statistics were calculated for all variables separately and by care disruption status. Logistic regression modeling was conducted to determine the correlates of care disruption. Results: Participants (N=680) reported 21% to 57% of cancer screening or treatment appointments were canceled/postponed from March 2020 through the end of 2020. Approximately 34% of residents stated they would need to know if their doctor's office is taking the appropriate COVID-related safety precautions to return to care. Higher education (OR = 1.26, 95% CI:1.11-1.43), identifying as female (OR = 1.60, 95% CI:1.12-2.30), experiencing more discrimination in healthcare settings (OR = 1.40, 95% CI:1.13-1.72), and having scheduled a telehealth appointment (OR = 1.51, 95% CI:1.07-2.15) were associated with higher odds of care disruption. Factors associated with care disruption were not consistent across races. Higher odds of care disruption for White residents were associated with higher education, female identity, older age, and having scheduled a telehealth appointment, while higher odds of care disruption for Black residents were associated only with higher education. Conclusions: This study provides an understanding of the factors associated with cancer care disruption and what patients need to return to care. Results may inform outreach and engagement strategies to reduce delayed cancer screenings and encourage returning to cancer care. Funding: This study was supported by the National Cancer Institute's Administrative Supplements for P30 Cancer Center Support Grants (P30CA091842-18S2 and P30CA091842-19S4). Kia L. Davis, Lisa Klesges, Sarah Humble, and Bettina Drake were supported by the National Cancer Institute's P50CA244431 and Kia L. Davis was also supported by the Breast Cancer Research Foundation. Callie Walsh-Bailey was supported by NIMHD T37 MD014218. The content does not necessarily represent the official view of these funding agencies and is solely the responsibility of the authors.

Financial burden of men with localized prostate cancer: a process paper.

Background: Many individuals undergoing cancer treatment experience substantial financial hardship, often referred to as financial toxicity (FT). Those undergoing prostate cancer treatment may experience FT and its impact can exacerbate disparate health outcomes. Localized prostate cancer treatment options include: radiation, surgery, and/or active surveillance. Quality of life tradeoffs and costs differ between treatment options. In this project, our aim was to quantify direct healthcare costs to support patients and clinicians as they discuss prostate cancer treatment options. We provide the transparent steps to estimate healthcare costs associated with treatment for localized prostate cancer among the privately insured population using a large claims dataset. Methods: To quantify the costs associated with their prostate cancer treatment, we used data from the Truven Health Analytics MarketScan Commercial Claims and Encounters, including MarketScan Medicaid, and peer reviewed literature. Strategies to estimate costs included: (1) identifying the problem, (2) engaging a multidisciplinary team, (3) reviewing the literature and identifying the database, (4) identifying outcomes, (5) defining the cohort, and (6) designing the analytic plan. The costs consist of patient, clinician, and system/facility costs, at 1-year, 3-years, and 5-years following diagnosis. Results: We outline our specific strategies to estimate costs, including: defining complex research questions, defining the study population, defining initial prostate cancer treatment, linking facility and provider level related costs, and developing a shared understanding of definitions on our research team. Discussion and next steps: Analyses are underway. We plan to include these costs in a prostate cancer patient decision aid alongside other clinical tradeoffs.

A Framework for Equitable Partnerships to Promote Cancer Prevention and Control in Rural Settings.

Rural populations continue to experience persistent cancer disparities compared with urban populations particularly in cancers that can be prevented or detected early through screening and vaccination. Although the National Cancer Institute and the larger cancer research community have identified rural community partnerships as the foundation for reducing the disparities, we have identified limited application of community-based participatory research in cancer prevention and control research. Guided by the Community-Based Participatory Research Conceptual Model and our collective experience, we provide a framework for a community-cancer center partnership that focuses on promoting health equity. In this commentary, we articulate that the partnership process must foster capacity for communities and cancer centers, strive for rural representation in clinical trials and biobanking, build a pipeline for dissemination and implementation research, and create a bidirectional flow of knowledge between communities and academic institutions. Authentic partnerships with rural communities should be the ultimate goal of cancer centers, and the process described in this commentary can serve as an initial platform to build capacity and continue to strive toward that goal.

Strategies to Achieve Breast Health Equity in the St. Louis Region and Beyond over 15+ Years.

Community-based participatory strategies are a promising approach to addressing disparities in community health outcomes. This paper details the efforts of Siteman Cancer Center to achieve breast health equity over the past 15+ years. We begin by describing the activities and successes arising from our breast health community partnerships including identifying priorities, developing recommendations, and implementing patient navigation services to advance breast health. This system-wide coordinated navigation approach that includes primary and specialty care providers helped to increase potential impact on reducing breast health disparities by expediting care, increasing care efficiency, and standardizing referral procedures across systems for all women including those who are uninsured and underinsured. We also discuss a mobile mammography unit that has been deployed to serve women living in both urban and rural regions. The van reached a particularly vulnerable population that was mostly poor, uninsured, and with limited educational backgrounds regardless of their zip code of service. This work shows that collaborations between academic and community partners have resulted in decreased late stage at diagnosis and improved access to mammography. Furthermore, we offer lessons learned and recommendations that may be applicable to other communities.

Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks.

This study investigates how patients' privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals' privacy concerns and trust in doctors were significantly associated with their need for control. Although participants' privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.

An Evaluation of Follow-Up Activities of Participants From an Urban Prostate Cancer Screening Event.

This study aims to evaluate follow-up activities completed by participants attending community prostate cancer (PCa) screening events. On-site surveys were collected from participants of 17 free PCa screening events from 2007 to 2011 in the St. Louis, MO metropolitan area. Follow-up action surveys were mailed to all on-site participants to assess medical (i.e., made an appointment with a doctor, got additional testing for PCa, made an appointment to be screened) and nonmedical activities (i.e., sought social support, health information-seeking, health behavior modifications) completed after the PCa screening event. Further, t tests and chi-square tests characterized participant information from the on-site survey and within each follow-up activity category for the mailed surveys. Among 1,088 on-site community PCa screening participants, the mean age was 50 years old, 94% were Black, and 30% responded to the mailed follow-up action survey. For the recorded follow-up activities, 65% of participants reported medically reported activities, of which "made an appointment to get a yearly physical" was the most common action (29%). Health behavior modifications were the most common nonmedically related activities (44%). Health information-seeking behaviors were the least reported follow-up action (22%). Men with higher incomes, married, with health insurance, and a primary care physician, most often participated in post-PSA screening activities, namely medically-related and social support activities. Understanding the most common activities completed by participants of a community PCa screening suggests the effectiveness of community events to re-engage underserved populations in the health-care system and provides insight on acceptable health promotion opportunities.

EVALUATING COMMUNITY ENGAGEMENT IN RESEARCH: QUANTITATIVE MEASURE DEVELOPMENT.

Although the importance of community engagement in research has been previously established, there are few evidence-based approaches for measuring the level of community engagement in research projects. A quantitative community engagement measure was developed, aligned with 11 engagement principles (EPs) previously established in the literature. The measure has 96 Likert response items; 3-5 quality items and 3-5 quantity items measure each EP. Cronbach's alpha is used to examine the internal consistency of items that measure a single EP. Every EP item group had a Cronbach's alpha > .85, which indicates strong internal consistency for all question groups across both scales (quality and quantity). This information determines the level of community engagement, which can be correlated with other research outcomes.

A Tale of Two Community Networks Program Centers: Operationalizing and Assessing CBPR Principles and Evaluating Partnership Outcomes.

BACKGROUND: Community Networks Program (CNP) centers are required to use a community-based participatory research (CBPR) approach within their specific priority communities. Not all communities are the same and unique contextual factors and collaborators' priorities shape each CBPR partnership. There are also established CBPR and community engagement (CE) principles shown to lead to quality CBPR in any community. However, operationalizing and assessing CBPR principles and partnership outcomes to understand the conditions and processes in CBPR that lead to achieving program and project level goals is relatively new in the science of CBPR. OBJECTIVES: We sought to describe the development of surveys on adherence to and implementation of CBPR/CE principles at two CNP centers and examine commonalities and differences in program-versus project-level CBPR evaluation. METHODS: A case study about the development and application of CBPR/CE principles for the Missouri CNP, Program for the Elimination of Cancer Disparities, and Minnesota CNP, Padres Informados/Jovenes Preparados, surveys was conducted to compare project versus program operationalization of principles. Survey participant demographics were provided by CNP. Specific domains found in CBPR/CE principles were identified and organized under an existing framework to establish a common ground. Operational definitions and the number of survey items were provided for each domain by CNP. CONCLUSION: There are distinct differences in operational definitions of CBPR/CE principles at the program and project levels of evaluation. However, commonalities support further research to develop standards for CBPR evaluation across partnerships and at the program and project levels.

A Community Coalition to Address Cancer Disparities: Transitions, Successes and Challenges.

Community-based participatory (CBP) strategies are considered important to efforts to eliminate disparities. This paper outlines how the Program for the Elimination of Cancer Disparities (PECaD) uses CBP strategies as a part of a long-term cancer education, prevention, and control strategy in an urban community. Community partnerships have proved to be vital resources to inform PECaD's agenda and the research practice of academic partners. We begin with a description of PECaD governance and partnership structures. The paper then describes programmatic activities and successes, including efforts to monitor clinical trials, deployment of mammography resources, anti-smoking, and prostate and colorectal cancer (CRC) screening education. The influence of changes in funding priorities, preventive screening policy, and community partner development on the partnership process over time is discussed. PECaD community partners have grown and expanded beyond the Program's mission and developed additional partnerships, resulting in a reevaluation of relationships. The impact of these external and internal changes and pressures on the partnerships are noted. The evolution of the evaluation process and what it has revealed about needed improvements in PECaD activities and operations is presented. A summary of the lessons learned and their implications for CBP practice are provided.

Perceived barriers to mammography among underserved women in a Breast Health Center Outreach Program.

BACKGROUND: To investigate perceived barriers to mammography among underserved women, we asked participants in the Siteman Cancer Center Mammography Outreach Registry-developed in 2006 to evaluate mobile mammography's effectiveness among the underserved-why they believed women did not get mammograms. METHODS: The responses of approximately 9,000 registrants were analyzed using multivariable logistic regression. We report adjusted odds ratios (OR) and 95% confidence intervals (CI) significant at 2-tailed P values less than .05. RESULTS: Fears of cost (40%), mammogram-related pain (13%), and bad news (13%) were the most commonly reported barriers. Having insurance was associated with not perceiving cost as a barrier (OR .44, 95% CI .40 to .49), but with perceiving fear of both mammogram-related pain (OR 1.39, 95% CI 1.21 to 1.60) and receiving bad news (OR 1.38, 95% CI 1.19 to 1.60) as barriers. CONCLUSION: Despite free services, underserved women continue to report experiential and psychological obstacles to mammography, suggesting the need for more targeted education and outreach in this population.

Successful subject recruitment for a prostate cancer behavioral intervention trial.

BACKGROUND: Inadequate participant recruitment, which may lead to unrepresentative study samples that threaten a study's validity, is often a major challenge in the conduct of research studies. PURPOSE: The purpose of this article is to describe the development and implementation of a recruitment plan and evaluate the different recruitment strategies for a prostate cancer behavioral intervention trial. METHODS: Our recruitment plan was based on a framework (The Heiney-Adams Recruitment Model) that we developed, which combines relationship building and social marketing. We evaluated the success of our model using several different recruitment sources including: mailed letters, physician referral, and self-referral. RESULTS: Recruitment rates ranged from 67% for a support services department mailing to 100% for physician referral. While our original list of contacted patients was comprised of only 13% African American (AA) men, 22% of our recruited participants were AA. LIMITATIONS: One of the strongest barriers to recruitment was strict patient eligibility. Another significant barrier was the lack of electronic records systems to allow for the identification of large numbers of potential participants. CONCLUSIONS: In conclusion, our model incorporating social marketing and relationship building was quite successful in recruiting for a prostate cancer behavioral study, particularly AA participants. In developing strategies, future researchers should attend to issues of staffing, financial resources, physician support, and eligibility criteria in the light of study accrual.

A church-based intervention to promote informed decision making for prostate cancer screening among African American men.

OBJECTIVES: This feasibility study developed and pilot tested an intervention to: (1) increase knowledge about prostate cancer screening; and (2) promote self-efficacy to participate in the informed decision-making process. SETTING: African American men are a priority audience for prostate cancer screening interventions to promote informed decision making, and faith-based settings have been shown to be an effective venue to reach this population. Therefore we used predominantly African American churches to develop and test our intervention. PARTICIPANTS: Participants (N = 73) were recruited, and the intervention was administered by an African American health educator. INTERVENTION: We developed and pretested a prostate cancer screening informed decision-making intervention based on the Ottawa Decision Support Framework and the health belief model. The intervention included a tool called the "road map," which depicts the potential consequences of a decision to undergo or forgo screening. A quasiexperimental design was used to test the intervention. MAIN OUTCOME MEASURES: The main outcome measures were change in knowledge and self-efficacy post intervention. RESULTS: Prostate cancer knowledge (p < .0001) and self-efficacy (p = .025) significantly increased. CONCLUSIONS: A church-based intervention delivered by an African American health educator is a promising strategy for promoting informed decision making among African American men.

Prostate cancer disparities in South Carolina: early detection, special programs, and descriptive epidemiology.

Available evidence suggests that there may be qualitative differences in the natural history of PrCA by race. If this is true then additional etiologic research is needed to identify places in the causal chain where we can intervene to lower PrCA rates in AA men. South Carolina may prove to be a useful context in which to study prostate cancer etiology, because of the presence of unique environmental exposures. For example, soil selenium and cadmium concentrations unique to South Carolina might have a differential affect in the rural areas of the state where ground water use is more common and where AAs are more likely to live. These metals are important in terms of prostate metabolism and cancer. The possible interaction of geological factors with underlying biological factors such as metal transporter gene expression by race needs to be explored in South Carolina. Diet and exercise are consistently seen as possible primary prevention strategies for prostate and other cancers, as noted above. There may be very good reasons to intervene on diet and physical activity, but if the intention is to make a health claim with real, specific meaning for PrCA prevention and control then studies must be designed to test the effect of these modalities in rigorous ways at specific points in the natural history of prostate carcinogenesis. Nutrition and exercise programs need to be developed in South Carolina that are seen as acceptable by people at risk of PrCA; and they will need to focus on effective ways to prevent the development of PrCA, other cancers, and other health outcomes. Implementing diet and nutrition programs in rural parts of the state, possibly through schools or churches, offer benefit to both youth and adults alike. So, it would be possible, indeed it would be desirable, to create programs that may be used for research in one part of the population (e.g., men with PrCA), but are equally beneficial for others (e.g., their spouses and children). Organizing studies that can focus on promising new areas of research and changing the paradigms under which the research community currently operates probably will require re-conceptualizing research strategies employing methods that entail CBPR approaches. Because much of South Carolina's African-American population resides in rural parts of the state, outreach presents a challenge for both researchers and clinicians. Individuals living in rural areas are more likely than urban residents to live in poverty, report poorer health status, and not have private health insurance. Americans living in rural areas face disparities in access to basic public health services compared to those living in metropolitan areas. In very practical ways, local public health departments are absent in many rural communities, and rural hospitals continue to close, removing needed services. Closing of public hospitals has been shown to significantly increase the percentage of people without a primary health care provider as well as the percentage of people denied care. Public health departments are of particular importance to rural residents as they serve as the main avenue for public health and clinical care for this group. Issues such as access to care, lack of frequent physician's visits and quality of medical care have a negative impact on outcomes for men with PrCA, particularly in relationship to staging. If better outcomes are to be achieved in South Carolina, then more must be done to reach the community and provide better access to care in more rural areas of the state. Small media interventions, such as those presented in churches and barbershops may be an effective means for reaching the rural AA population. Our ability to reach out to and interact with the high-risk pockets in the state will be necessary for screening, treatment, and research (which, if conducted competently, will affect screening efficacy, treatment effectiveness, and primary prevention). It is believed that currently available decision-making materials for PrCA screening may not be appropriate due to socioeconomic as well as health literacy differences present in all male groups. It is unclear whether men in the lower socioeconomic groups are given appropriate information that allows them to make educated, informed decisions around PrCA screenings. Considering the number of males in the lower socioeconomic groups in South Carolina and the large AA male population, research evaluating the appropriateness of the existing materials could have an impact --both within the state and in national efforts. Patient education is a promising strategy, but educating the patient in the context of his family seems to be a more effective strategy for this population. Family networks and faith-based networks offer a strong support base for the patient when making health-related decisions, particularly for the African-American male. In collaboration with the SCCDCN, the South Carolina Cancer Alliance (SCCA) is currently developing a proposal to create a decision guide for prostate screening that is targeted toward the African-American male. The SCCA plans to pilot test new, culturally appropriate materials in the Low Country of South Carolina because of its comparatively large African-American population and its high rate of residential stability. South Carolina is one of only a few states to adopt expanded Medicaid coverage for the treatment of breast cancer. PrCA needs to receive equal recognition. This year alone in South Carolina 3,290 women will be diagnosed with breast cancer and 630 will die from the disease. Likewise, the American Cancer Society estimated 3,770 men in South Carolina would be diagnosed with prostate cancer and 440 will die from the disease in 2006. The 1 million dollars set aside in South Carolina budget by lawmakers for treatment of breast and cervical cancer patients makes no mention of prostate cancer, which is an unfair omission. Finally, there currently exists a number of high-quality PrCA treatment, research, and referral resources in the state. Collaborations across agencies, institutes and organizations throughout South Carolina would prove to be beneficial in reaching the most rural (and therefore hardest to reach) populations. Collaborative arrangements will be pursued to increase positive outcomes and better futures for South Carolinians.