Willis, Floyd B.

Abstract Intro: Compared to white men, Black men bear the highest burden of prostate cancer, experiencing a higher incidence and mortality rate, and poorer survivorship outcomes. Although prioritized, survivorship and quality of life (QOL) are under-studied in the fight against prostate cancer disparities. To address this issue, clinicians, researchers, and community advocates have formed the Inclusive Cancer Care Research Equity (iCCaRE) Consortium for Black Men. iCCaRE’s goal is to advance the science and practice of survivorship focused on the needs of Black men and their loved ones affected by prostate cancer. Methods: We developed a survivorship care plan (SCP) tailored to the whole person's needs. IRB-approved qualitative methods to preliminarily gain evaluation and guidance on the SCP. The SCP presented content in the following areas: diagnosis and treatment, follow-up care/surveillance, family history, care team, major co-morbidities, symptoms and quality of life, survivorship concerns, and health advisories. Results: 23 Black prostate cancer survivors (PCS) participated and provided feedback on the SCP Mean age was 64 years. PCS diagnosed between 2018-2023 between stages 1-4. The Majority of PCS were provided information for follow-up and side effects. But none had received a comprehensive SCP All agreed that the SCP would contribute to enhancing cancer knowledge, patient activation, and shared decision, and their QOL, if the SCP was obtained. A survivor noted “having inspirational quotes throughout the SCP is important”. An unforeseen consequence to the interviews was the emotional release for the men, justifying the need for the SCP and an expansion of its scope. Domains that the men wanted more contents were social support, sexuality, masculinity, and maintaining a healthy lifestyle. All PCS understood the value of having trusted family and friends to bear the burden of the disease despite some not having a solid support system. PCS emphasized the role of family support stating, “my wife and children helped me stay positive”. Another critical lifestyle component that survivors mentioned was their sexuality and how it directly reflects their masculinity. Although PCS adapted to other forms of intimacy like couples’ activities and stronger communication with their partners, majority of men struggle with adapting to their sexual performance. A quote by a survivor encompasses the mindset expressed by many of the men fear “Like a track star in his prime who can’t run anymore”. Erectile Dysfunction can lead to fear and anxiety among survivors, ultimately affecting QOL. Lastly, PCS wanted more options to stay fit and healthy. Further research and resources are needed to address survivor concerns in this area. Discussion: Overall, PCS have acknowledged that the SCP can assist them in these areas of concern, but more research is required. Life after prostate cancer treatment is an ongoing process; while some survivors cope better than others, it is evident a need for more information and guidance is not being provided to all those affected. Citation Format: James Morrison, Kimlin Ashing, Gaole Song, John McCall, Timethia J. Bonner, Che Ngufor, Getachew A. Dagne, Arnold Merriweather, Ewan Cobran, Cassandra N. Moore, Fornati Bedell, Rotimi Oladapo, Floyd B. Willis, JoAnne S. Oliver, Ernie Kaninjing, Roxana Dronca, Folakemi T. Odedina. iCCaRE qualitative interviews for Black prostate cancer survivors and quality of life [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C042.

Abstract Black men hold the highest prostate cancer burden among all ethnicities; thus, there is an urgent need for research to inform the development and implementation of a culturally tailored intervention to reduce disparities and improve outcomes. In response, the Inclusive Cancer Care Research Equity (iCCaRE) Consortium was created to advance health equity and reduce disparities in prostate cancer. Addressing the unique needs of Black men require a genuine bidirectional relationship between scientist and the community. In the Black community, faith-based organizations are respected institutions advocating for health equity and justice. Given their vital role as community health gatekeepers, the iCCaRE Consortium partners with faith-based organizations. Rooted in community engaged research (CER), we conducted an environmental scan through stakeholder meetings to discuss the prevailing challenges and opportunities to meet the needs of the Black community along the prostate cancer care continuum. iCCaRE investigators including Partnership Engagement Services (PES) core partnered with faith-based organizations to ensure and advance community responsive cancer prevention. Together, with our faith-based leaders (N=18), we identified gaps including issues associated with the care continuum from screening to diagnosis and from treatment to survivorship; disparities according to health coverage and social determinants of health, and best practices to assist patients including care coordination, patient navigation, digital innovations, and programs offered by patient advocacy organizations. In response to the needs of the community and the strengths of faith-based organization, we prioritized our initial focus on increasing community prostate cancer literacy and activation using co-design educational infographics for both traditional and technology-based communication platforms. The infographics provided evidence-based facts about prostate cancer burden in the Black community; and using a call to action approach, we emphasized the importance of taking action for life saving screening, prevention and healthy lifestyle. Taking action in prostate cancer symptom recognition, survivorship care, and quality care. Also, co-designed infographics were created for clinical studies and biospecimen awareness and participation and the importance of advocacy and equitable care. Another component incorporated face to face trainings and presentations to enhance their knowledge of cancer screening tools, epidemiology of prostate cancer, and pathways to care. This presentation highlighted the first step towards community based intervention development, implementation and dissemination towards equity and justice for prostate cancer prevention and patient/survivor improvements for Black men. Citation Format: James C. Morrison, Kimlin T. Ashing, Gaole Song, Timethia J. Bonner, Che Ngufor, Getachew Dagne, Arnold Merriweather, John McCall, Ewan Cobran, Cassandra N. Moore, Fornati Bedell, Rotimi Oladapo, Floyd B. Willis, Runcie Chidebe Chidebe, Noreen A. Stephenson, JoAnne S. Oliver, Vinessa Gordon, Folakemi Odedina. iCCaRE engagement of faith-based organizations to co-create and co-disseminate infographics addressing disparities in prostate cancer literacy and clinical and biospecimen studies [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 808.

AbstractBackgroundFor blood‐based biomarkers to fulfill their potential to revolutionize diagnosis and management of Alzheimer’s disease (AD), additional research in diverse populations remains critical. Here, we analyzed a biracial sample to assess the profiles of blood‐based AD biomarkers and their relationships to cognition and medical comorbidities.MethodsSelf‐reported African‐American (AA; n = 267) and non‐Hispanic White (NHW; n = 268) participants evaluated through the Mayo Jacksonville Alzheimer’s Disease Research Center were matched on age, sex, and clinical diagnosis. Plasma AD biomarkers (Aβ42/40, p‐tau181, GFAP, NfL) were measured using the Quanterix SiMoA HD‐X analyzer. Cognition was assessed with the Mini Mental State Examination. Wilcoxon rank sum tests were used to assess for differences in plasma biomarker levels by sex. Linear models tested for associations of race, chronic kidney disease (CKD), and vascular risk factors with plasma AD biomarker levels, covarying for age and sex. Additional models assessed for interactions between race and plasma biomarkers in predicting cognition, further covarying for education.ResultsThe sample included adults aged 43‐100 years, with 69% women. Education was higher in NHW participants (median 16 vs. 12 years, p<0.001). APOE (apolipoprotein E) ε4 positivity was higher in AA participants (43% vs. 34%; p = 0.04). There were no differences in plasma AD biomarker levels between AA and NHW participants. These findings were unchanged after stratifying by cognitive status (unimpaired versus impaired). Although the association between p‐tau181 and cognition appeared stronger in NHW participants while the association between Aβ42/40 and cognition appeared stronger in AA participants, these findings did not survive after excluding individuals with CKD. Women displayed higher GFAP (p = 0.002) and lower p‐tau181 (p = 0.001) levels than men. Diabetes was inversely associated with GFAP levels (p<0.001).ConclusionsIn a biracial, community‐based sample, we observed that sex differences, CKD, and vascular risk factors contributed to variation in plasma AD biomarkers, while self‐reported race did not. Our results reinforce the critical need to account for sex and systemic medical comorbidities in equitably deploying blood‐based AD biomarkers in the general population.

Background For individuals living with chronic conditions like diabetes mellitus and obesity, there is a need for sustainable behavioral strategies and physiologic tools. These tools support identifying and addressing barriers to healthy eating, reducing body mass index (BMI), and building increased physical resilience in real time. Objective To evaluate whether a 12-week learning management system designed to combine nutritional intervention with education and coaching on improving emotional intelligence (EI) could alter cardiometabolic outcomes. Methods This pre-post prospective study enrolled 37 adult volunteers with BMI greater than 25 to participate in a 12-week learning management system. Primary (BMI, systolic blood pressure, diastolic blood pressure, low-density lipoprotein [LDL], high-density lipoprotein, and fasting glucose levels) and secondary self-reported outcomes were assessed at baseline, 12 weeks, and 6 months after enrollment using Short Form-36, Emotional Quotient Inventory (EQi), and Whole Health Index (WHI). Linear mixed-effects regression models with random effect were used to estimate changes in primary and secondary outcomes. We adjusted for multiple testing using Holm step-down method. Results BMI and LDL were the only primary endpoints lower at program completion and 6-month follow-up compared to baseline levels (−1.63 and −17.77 mg/dL, respectively; P < .001). Secondary outcomes showing statistically significant improvement from baseline to 6-month follow-up included energy/fatigue (Short Form-36), self-regard (EQi), decision-making (EQi), impulse control (EQi), stress management (EQi), Whole Brain – Form A (WHI), Whole Food – Form C (WHI), and Whole Body – Form D (WHI). Conclusion This study provides preliminary evidence that lifestyle programs combining nutritional interventions and EI can have a significant impact on BMI and LDL. Our study highlights the potential importance of both nutrition and EI in programs targeting diet and lifestyle modification.

Abstract Introduction: The lack of representation of minoritized and marginalized (MaM) populations in Clinical Trials (CTs) has been noted as one of the key factors that contribute to cancer health disparities. The challenges of CT diversity are multifactorial, including barriers at the personal, provider, health systems and protocol levels. Guided by a vision of developing and implementing inclusive CTs that address the priorities identified by our communities, we created a Community Research Registry (CoRR) with three primary aims: 1. Maintaining a CoRR database of participants who may be eligible for participation in future CTs; 2. Using the database, facilitate matching of MaM populations to Clinical Trials; and 3. Facilitating access of MaM populations to CTs. Methodology: The Mayo Clinic CoRR is IRB-approved and was implemented in 2022 through bidirectional engagement of communities, partnership with community leaders to foster community input, dissemination of CT information to high-risk communities, and use of evidence-based education materials for community outreach. Participants are recruited in MaM communities (including clinics, churches, health events) and through effective use of social media. Organized events for recruitment include: 1. CT education; 2. provision of culturally tailored CT educational materials and T-shirts; and 3. data collection from those who consent to be part of the registry. The inclusion criteria for the registry are adults and ability to read and write in English or Spanish. Informed consent is obtained prior to completion of the registry form and participants receive $10 incentive. The data is collected using REDCap, and includes name and contact information of participants, demographic information, chronic disease status and explicit consent to be contacted for future research studies (with option to state type of study). New Unpublished Data: Within 7 months of CoRR implementation, 184 MaM participants signed up with 92% Black (including 10% African immigrants), 7% Hispanic, 69% female, median age of 64 years, 24% rural residents, and most of the participants had high school level education. Over 30% of participants reported medical history of hypertension, high cholesterol, arthritis and/or diabetes. 8% reported cancer. Approved investigators (with appropriate community engagement training) have direct access to de-identified CoRR information though Tableau for the purpose of estimating participants for their study. Tableau has been found to be effective for investigators to explore the database for CT/research match. All requests for participants matching are approved by a CoRR Board that includes community representatives, prior to matching. CoRR CT matching is now in its pilot phase, with Mayo Clinic studies identified for matching. Conclusion: The feasibility of the CT CoRR has been established, and has led to over 20 CoRR Champion organizations, including churches, sororities, fraternities, and the American Legion Post. Citation Format: Folakemi T. Odedina, Floyd Willis, Jennifer Crook, Emelina Asto-Flores, Kim Barbel Johnson, Chad Workman, Mayo Clinic Comprehensive Cancer Center CommunityOutreach and Engagement. Increasing clinical trials diversity through Community Research Registry (CoRR): The Community Champions for clinical trials program [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 2 (Clinical Trials and Late-Breaking Research); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(8_Suppl):Abstract nr LB112.

Abstract BACKGROUND: Despite decades of effort and proposed solutions to increase diversity in clinical trial participation, African Americans remain underrepresented. Race-specific review of clinical trial participation challenges suggests that engagement with African American physicians influence successful recruitment and appropriate enrollment of underrepresented groups in clinical research. Tailoring best-practices for minoritized populations cannot be sustainably facilitated without trusted community-academic partnerships. Engagement with African American community physicians creates capacity for leveraging resources critical to participation of African Americans in decentralized clinical trials (DCT). The Northeast Florida Clinical Trials and Translational Science (NEF-CTaTS) Consortium was formed in 2022 to address cancer health disparities experienced by minoritized, marginalized and underserved communities in NE Florida. AIM:The NEF-CTaTS Consortium convened a Focus Group with 22 African American community physicians who care for minoritized patients to solicit their input in fostering active research, research training, community outreach and engagement, and to address advantages of and barriers to forming a research network of minority physicians to conduct decentralized clinical trials and translational research. METHODS: Practicing community primary care physician members of the Northeast Florida Medical Society, a chapter of the National Medical Association where invited to participate. Physician demographic and practice information was collected from physicians who consented to participate prior to the Focus Group discussion. A Clinical Trial Needs Assessment was completed by each participating physician. The Physician Focus Group discussion was moderated by a skilled African American community physician member of the NEF-CTaTS consortium with extensive experience in conducting clinical trials. The discussion was recorded and transcribed for data analysis. IRB approval was obtained prior to informed consent, data collection and Focus Group Discussion. RESULTS: Qualitative analysis of the raw data is currently ongoing at the time of this submission. Transcribed discussion details and the observational notes identified thematic framework for descriptive statements, indexing, and sifting data. Mapping and interpretation of data is being analyzed for relationships, internal consistency, intensity of comments and specificity of responses. Analysis is scheduled to be complete within 4 weeks of abstract submission. CONCLUSIONS: Efforts to appropriately address disparities in clinical trial participation and DCT participation of African Americans require distinct and deliberate efforts to engage African American physician stakeholders. Addressing issues of trust and the impact of social-determinants of health on minoritized populations can be culturally and appropriately addressed by community-academic partnerships. Citation Format: Floyd Willis, Folakemi Odedina, Kim Barbel Johnson, Rogers Cain, Jennifer Crook. Addressing African American physician engagement in decentralized clinical trial by clinical trials and translation science consortium focus group participation [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B035.

A dementia friendly community allows people with dementia and their care partners to remain engaged in their community well into the disease. This study presents the results of primary research aimed at exploring perceptions regarding building a dementia friendly community in an African American neighborhood in northeast Florida. Twelve focus groups and five interviews were conducted with people living with dementia, informal and formal care partners, community stakeholders and neighborhood residents, and analyzed using a grounded theory approach. Three main themes emerged from the analyses, including (1) perceived needs, (2) facilitators and barriers to being dementia friendly, and (3) opportunities for the community to become more dementia friendly. Study findings highlight the unique needs of a single African American neighborhood and the importance of culturally tailoring the dementia friendly model to diverse communities.

AbstractBackgroundAfrican Americans are at greater risk of Alzheimer’s disease (AD) and AD‐related dementia (ADRD). They are also less likely to access dementia resources or participate in dementia research. The National Alzheimer’s Project Act (NAPA) calls for special attention to dementia‐related health disparities in high risk groups. Identifying effective tools to improve rates of dementia resource utilization and research participation by African Americans is essential to achieving dementia health equity.MethodTwo neighborhoods of Jacksonville, FL, defined by zip codes, were the focus of this study. Both zip codes have a large population of African American residents per 2010 US Census, and a history of hosting outreach activities by our Alzheimer’s Disease Research Center (ADRC). In one neighborhood, we modified the NAPA Dementia Friendly (DF) America toolkit to serve as a model of outreach. The second neighborhood served as a control (CON), in which we maintained our traditional outreach model of community‐based lectures. Primary outcome measures were: (1) enrollment in ADRC center‐related studies and (2) phone call volumes from individuals seeking dementia resource information. The outcomes in the DF and CON neighborhoods were compared via Fisher’s exact test to those in other zip codes in Jacksonville (OT).ResultIn the 18 months following implementation of the DF intervention, 54 African Americans enrolled in ADRC‐related research (19 DF, 3 CON, 32 OT), compared to 21 during the 18 months prior (2 DF, 0 CON, and 19 OT). The increase in DF residents enrolling in research following the intervention was statistically significant (p =0 .02) relative to OT residents. The increase observed in the CON residents was not statistically significant (p=1.0) compared to OT residents. Call volumes from African Americans increased from 13 prior to program implementation (all from OT) to 62 calls after implementation (22 DF, 1 CON, 39 OT). The increase among DF residents seeking information following the intervention was statistically significant (p =0.008) whereas the increase was not significant in the CON residents (p=0.54).ConclusionResults suggest that the NAPA DFA can be leveraged to improve dementia resource utilization and research participation among community‐dwelling African Americans.

AbstractBackgroundAfrican Americans are at higher risk of developing Alzheimer’s disease (AD) and AD‐related dementia. They are also more likely to live in communities with fewer dementia resources. The 2011 National Alzheimer’s Project Act calls for special attention to dementia‐related health disparities in high risk groups. Ensuring access to dementia‐specific information is one tactic for addressing disparities; however, the method by which information is delivered may play a role in how effectively that information is understood and retained over time.MethodWe delivered the same dementia education presentation to two comparable, predominantly African American neighborhoods in Jacksonville, FL. In one (intervention) community, the presentation was followed by an hour‐long focus group on what makes a community “dementia friendly”, using modified materials from the Dementia Friendly America (DFA) toolbox. In the other (control) community, the presentation was followed by a social hour allowing participants to interact with presenters and ask questions informally. Our primary objective was to assess the impact of the different conditions on AD knowledge.ResultsA 7‐item scale assessing AD knowledge was administered to immediately before and after the educational presentation (pre‐test, immediate post), and again two months later (Intervention group n=40; Control n=37). Additional, one‐year follow‐up was completed on the intervention community (n=21). Groups did not differ in AD knowledge at pre‐test (M=4.5 vs. 4.2, p=NS). At immediate post‐test, both groups improved their scores, but there was again no difference between groups (M=5.8 vs. 5.4, p=NS). At two‐month post‐testing, both groups declined in their knowledge score, but the control group declined more precipitously, yielding a significant group mean difference (M= 5.4 vs. 4.7, p=0.02). At one year follow‐up, a subsample of the intervention group (n=21) was re‐examined and demonstrated no significant decline in knowledge scores as compared to 2‐month follow‐up (M=5.7 vs. 5.4, p=0.36).ConclusionResults suggest that focus group discussion following dementia education as per the DFA model may contribute to greater retention of information and exert a sustainable impact on AD knowledge over time in an African American community setting.