Fullwood, Dottington

Abstract Black/African American populations, globally, bear the greatest prostate cancer (CaP) burden compared to other racial/ethnic groups. Addressing CaP disparities in Black men is complex, requiring a patient-centered, community-centric and comprehensive approach. This study integrates iCCaRE Consortium findings and broader literature to address unmet needs in survivorship care. The iCCaRE Consortium implemented five complementary pilot studies using mixed-methods designs, including feasibility trials, qualitative research, and observational analyses across the United States and sub-Saharan Africa. Descriptive statistics, subgroup analyses, and qualitative thematic analyses were performed across these studies. Collectively, projects addressed multilevel determinants including social, behavioral, and biological drivers of disparities. Project 1 implemented a Virtual Reality Assistant (ViRA) across clinical and community settings, with ongoing evaluation in pragmatic trials. Project 2 showed strong patient preference for home-based cancer care. Project 3 enrolled demonstrated trends toward improved health-related quality of life. Project 4 identified key themes influencing survivorship experiences. Project 5 identified biological mechanisms linking stress, immune modulation, and symptom burden. The iCCaRE pilot projects demonstrate the feasibility and early impact of a consortium-based, transdisciplinary approach to addressing CaP disparities in Black men. These findings highlight the importance of integrating patient-centered interventions, community engagement, and biological insights to inform scalable strategies aimed at improving survivorship outcomes and advancing health equity. The iCCaRE Consortium demonstrates that a transatlantic, patient-centered, and multidisciplinary approach integrating social, clinical, and biological factors can generate scalable strategies to improve survivorship outcomes and advance equity in CaP care for Black men.

Prostate cancer represents a significant health disparity among Black men, who experience higher rates of both incidence and mortality compared to other racial groups. Understanding the complex interplay of cultural, familial, and socioeconomic factors that shape health behaviors is essential for the development of effective interventions. This study sought to explore the lived experiences of ethnically diverse Black men with prostate cancer, focusing on how cultural context, family history, and spirituality influence health decisions and engagement with care. Through a secondary analysis of existing data, personal narratives from 32 Black prostate cancer survivors, primarily U.S.-born Black men, were examined to identify recurring themes that revealed the multifaceted challenges and motivations these men face. The analysis uncovered eight key themes that reflect a complex landscape, including medical distrust fueled by cultural perceptions and past negative experiences, the dual influence of family history on seeking early care versus hesitation, and the role of spirituality as a guiding force in health decisions. Additionally, financial constraints and limited access to comprehensive health information emerged as critical factors affecting engagement with preventive care. The findings underscore the need for culturally sensitive approaches that acknowledge the diverse experiences of Black men in their prostate cancer journey. By understanding the influence of family dynamics, spirituality, and socioeconomic challenges, future research can create targeted interventions that promote informed decision-making and help reduce disparities in prostate cancer outcomes.

Abstract Background: Prostate cancer continues to disproportionately affect Black men, who face notonly higher incidence, but also more severe outcomes compared to other racial and ethnicgroups. While advancements in survivorship care have been made, significant disparities remain, highlighting the critical need for research that addresses the distinct challenges faced by Black men during their survivorship journey. In the face of these ongoing inequities, understanding the advocacy, resilience, and lived experiences of Black men post-treatment is essential. By exploring these factors, our study aims to uncover actionable strategies to enhance survivorship care and support, driving the development of targeted interventions that can close the gap in outcomes for this underserved population. Methods: We conducted a secondary analysis of qualitative interviews with 31 Black prostatecancer survivors participated in the CaPCaS study, aiming to explore their perspectives onsurvivorship and advocacy. A Grounded Theory approach was employed to rigorously analyze the participants' narratives. Through open and axial coding, we systematically identified key themes from the transcribed, verified, and deidentified audio recordings, ensuring a comprehensive exploration of their post-treatment experiences. Results: Our analysis revealed four central themes that highlight the evolving health behaviors and coping mechanisms of participants. First, Self-care and Health Management emerged, showcasing empowered decision-making around exercise, dietary improvements, and hydration. Second, Increased Awareness and Prioritization underscored the shift toward heightened health consciousness, with participants emphasizing the importance of personal health and prioritizing food quality. Third, the theme of Emotional and Social Support illustrated how shared experiences fostered comfort and perspective, reinforcing ongoing health maintenance. Finally, participants reframed Health Challenges, viewing them as minor nuisances rather than deterrents, bolstered by medical reassurance and a strong survivor mindset. Conclusion: These findings emphasize the importance of holistic health strategies in improving the quality of life for Black men during their post-treatment prostate cancer survivorship journey. By fostering empowered self-care, prioritizing health awareness, and leveraging emotional and social support, survivors can navigate ongoing health challenges with resilience and confidence. The reframing of health issues as manageable aspects of their lives further underscores the potential for interventions to enhance long-term well-being and reduce disparities in prostate cancer survivorship. Citation Format: Dottington Fullwood, Mary Ellen Young, Folakemi T. Odedina. Health maintenance reframed: Insights from Black prostate cancer survivors on prioritizing wellbeing [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2025; Part 1 (Regular Abstracts); 2025 Apr 25-30; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2025;85(8_Suppl_1):Abstract nr 4011.

Background: This study aimed to analyze the geographic distribution of diabetes and sedentary behavior across Florida counites, identifying high-risk areas to inform targeted public health interventions. We seek to inform targeted public health interventions and address health disparities, particularly in rural areas. Methods: Data from the 2017-2019 Florida Behavioral Risk Factor Surveillance System (BRFSS) were analyzed, among adults aged 18 years and older. Diabetes status was determined by self-reported diagnosis, and sedentary behavior was assessed based on physical activity participation. Respondents who declined to answer or were unsure were excluded. Results: The statewide prevalence of diabetes diagnosis in Florida was 11.7% (95% CI: 10.8-12.6), with substantial geographic variation across counties. Sedentary prevalence varied significantly across the state, compared to the statewide rate of 26.5% (95% CI: 25-28). Counties with high diabetes prevalence often had elevated rates of sedentary behavior. Rural northern panhandle counties had higher concentrations of both diabetes and sedentary behavior. BRFSS design variables and weights ensured representative estimates for Florida. Conclusion: This study highlights the elevated prevalence of diabetes and sedentary lifestyles in the northern counties of Florida. The geographic patterns underscore the need for targeted, county-level interventions. Despite troubling rise in diabetes and sedentary behavior, there is a significant opportunity to mobilized community and outreach services, ensuring they are effectively deployed to these high-risk areas.

Decentralized clinical trials (DCTs) provide the opportunity to bring interventional studies closer to participants in their homes or a suitable location closer to prospective participants, thus increasing participants’ diversity, accrual, retention, health care, and research access. However, little is known about the burden of caring for cancer patients participating in DCTs. This article describes how DCTs might affect the caregivers of cancer patients. The points discussed include how technological challenges for those without adequate digital literacy can overburden participants and their caregivers at home, as well as managing and optimizing research logistics and safe handling of samples. In addition, the shift in labor from the study personnel to the participants and their caregivers in a bid to complete several study procedures on their own can increase the care burden, especially if not well incentivized. Therefore, it is important to accumulate evidence on ways to optimize DCTs, especially in the home environment, without increasing the burden on caregivers, who will be an integral part of the study team and support the research at home.

Objectives Communication barriers, such as channels, comfort, and location, can negatively impact Black prostate cancer survivors’ experiences and health outcomes after treatment. Addressing these barriers promotes a survivor-centric approach that views survivors as active partners in their care. This study explored the communication preferences of Black prostate cancer survivors, focusing on preferred channels, sources, and locations for enhanced quality of life. Design Using grounded theory methodology, we conducted engaged in-depth interviews with 7 Black prostate cancer survivors, centering on their post-treatment experiences. We analyzed participant transcripts to develop codes and themes. Communication accommodation theory (CAT) was applied to examine how survivors adapt their communication styles to navigate barriers and improve their quality of life. CAT helped identify key patterns of survivors’ convergence and divergence in their communication with healthcare providers, crucial for developing survivor-centric communication strategies. Results The analysis revealed the importance of acknowledging cultural and racial perspectives in post-treatment survivorship. Themes extracted from the transcripts included communication barriers, preferences for information channels, and favored locations for sharing information. Survivors expressed a preference for a balance between face-to-face interaction and telehealth, with environments that provide safety and support playing a key role in encouraging vulnerability and open dialogue. Inclusive healthcare practices were seen as essential in empowering Black survivors to engage in meaningful communication without feeling silenced or undervalued, thus fostering a dignified quality of life. Conclusion Tailoring post-treatment communication practices to incorporate cultural sensitivity, inclusive healthcare, and safe spaces is pivotal to supporting Black survivors. These findings provide a pathway to improving survivors’ experiences and empower them to actively shape their survivorship journey. Moreover, they highlight Black men’s need for trustworthy communication with healthcare providers and peers during the post-treatment period, emphasizing the importance of direct, personalized interactions.

Abstract Background: Prostate cancer remains a significant health concern, particularly among Black men who experience higher incidence rates and poorer outcomes compared to other racial and ethnic groups. Despite advances in survivorship care, disparities persist in the survivorship experiences, underlying the urgent need for research focusing on the unique needs of Black men in prostate cancer survivorship. By understanding the advocacy efforts and experiences of Black men who have completed prostate cancer treatment, we can identify strategies to better support this vulnerable population and inform interventions aimed at improving survivorship outcomes. Our study explored the advocacy efforts, experiences, and skills of Black men post-prostate cancer treatment to inform targeted interventions aimed at improving survivorship outcomes. Methods: Qualitative interviews were used to obtain information from 31 Black prostate cancer survivors who have completed treatment to explore their insights on survivorship and advocacy. Grounded Theory approach was utilized to analyze participants’ narratives. We employed open and axial coding techniques to extract themes from audio-recorded interviews that were then transcribed, verified and deidentified. Results: We identified several significant themes among Black men who completed prostate cancer treatment. First, participants actively engaged in "spreading the word," advocating for awareness and early detection within their communities through various channels. Second, they emphasized "the importance of advocacy," advocating for themselves and policy changes to address healthcare disparities. Third, participants were committed to "sharing information," openly discussing experiences and providing support to others navigating prostate cancer. Additionally, they highlighted the significance of "reflecting back," drawing from their life stories to offer valuable insights and guidance. Conclusion: This study sheds light on the advocacy efforts and experiences of Black men who have completed prostate cancer treatment, offering valuable insights into their perspectives and actions within their communities. Through the identification of five significant themes, including spreading awareness, advocacy importance, information sharing, and reflective support, this research underscores the proactive engagement of participants in addressing the challenges of prostate cancer. By amplifying the voices and experiences of these individuals, this study contributes to a deeper understanding of the multifaceted nature of prostate cancer survivorship within marginalized communities, ultimately informing future interventions and policies aimed at improving outcomes and reducing disparities in prostate cancer survivorship care. Citation Format: Fullwood, Mary Ellen Young, Folakemi T. Odedina. Science of Cancer Survivorship Advocacy: Perspectives from Black Prostate Cancer Survivors [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 C038.

Abstract Prostate cancer, impacts over 3.1 million survivors, poses persistent challenges in post-treatment care, creating uncertainties regarding the best course of follow-up actions for leading productive lives. Unfortunately, these concerns, especially among ethnically diverse Black men, are frequently overlooked. The post-treatment journey for Black prostate cancer survivors is dependent on how they navigate survivorship to determine how it impacts their quality of life and emotional wellbeing. This study evaluated the post-treatment cancer experience and gauge satisfaction with care among a cohort of Black survivors (n = 45). Utilizing data from the 2023 National Coalition for Cancer Survivorship State of Survivorship Study (n = 1303), conducted between May 9th to June 6th, 2023, the research specifically targets self-identified Black males, constituting 10% of the study population and spanning an age range from 18 to 80 years. Results revealed that oncologists (44%) managed post-treatment care more than primary care physicians (30%). While conversation about follow-up care monitoring cancer tests regularly occurred (68%), while topics such as quality of life (27%), mental and emotional health (21%), and post-treatment survivorship care plans (9%) received minimal attention. Although most survivors felt generally informed about side effects (62% very informed), less than half felt their health care team was very helpful in dealing with them. Symptoms reported by survivors included feeling overly tired (47%), depression, anxiety, and mental health impacts (40%), and uncertainty about the cancer status (34%). Survivors engaging in diverse integrative treatments, including such practices as prayer and exercise, represented 29% and 28%, respectfully. Notably, 80% and 60% of individuals utilizing these modalities reported finding them effective during the post-treatment care phase. The journey from the point of prostate cancer diagnosis to post-treatment can impose a significant mental and physical toll on survivors. To address the emotional and psychological challenges associated with a diagnosis and post-treatment, survivors adopting integrative oncology modalities and exercise prescriptions to cope are crucial. These strategies may help survivors maintain a positive outlook and achieve optimal post-treatment health, with a focus on providing tailored resources that cater to the unique needs of Black survivors. Citation Format: Dottington Fullwood, Daniel Lee, Veronika Panagiotou, Samantha B. Siegel, Mariel Molina, Folakemi T. Odedina. Understanding survivorship: A national survey of post-treatment experiences in Black prostate cancer survivors [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 7447.

Abstract Introduction: The relentless surge of prostate cancer rates is rapidly alarming public health officials, leaving a trail of shattered hopes among Black men in the United States. This toll reduces mortality for this population, the urgent need for effective solutions becomes more apparent. Survivorship care plans (SCPs) emerge as a beacon of hope, holding the potential to transform the provision of care. Within this tool lies the encapsulation of vital cancer-related information, passed from the oncology team to the resilient survivor and their primary care physician. However, despite the unwavering support of national governing bodies, a disheartening reality persists for Black male survivors, who never access these life-saving plans. The study purpose was to identify receipt of SCPs and the preferred communication delivery of health information among Black prostate cancer survivors. Methods: Utilizing a grounded theory approach, our study delved into the experiences of a convenience sample of seven Black male prostate cancer survivors. In-person and telephone-based semi-structured interviews we sought to unravel unique narratives. The research inquiries used open-ended questions (1) knowledge, awareness, and understanding of SCPs; (2) interactions with medical professionals; and (3) preferred methods of communication of healthcare information. Employing a line-by-line descriptive force coding method, we extracted pertinent statements by open and axial coding to generate specific codes to encapsulate information collected from an underserved population. Results: Thorough analysis revealed several distinct themes pertaining to survivorship care plans and preferred communication styles. The relevant findings were a lack of SCPs knowledge, an absence of post-treatment care, the profound influence of faith and family support, and the value of group settings. Despite receiving education on treatment, survivors expressed a sense of being left adrift, as if their medical professional team had failed to provide them with a clear roadmap for their survivorship journey. In the absence of proper guidance, survivors resorted to considering pre-treatment risk assessments as a makeshift substitute for a comprehensive survivorship care plan. Conclusion: The impact of our study’s findings resonates deeply, revealing a startling reality: Black male survivors in our sample possessed a distressing lack of knowledge about the post-treatment phase of survivorship. Instead, they relied on the support of their spouses or fellow survivors with whom they connected during treatment sessions. The removal of government mandates aimed at promoting SCPs likely contributes toward a disheartening knowledge disparities among many Black men, leaving them without clear guidance regarding the crucial phase of aftercare. Armed with this data, we have the opportunity to drive change and enhance the development of culturally tailored, interactive care plans specifically designed to support Black male survivors after they conquer prostate cancer treatment. Citation Format: Dottington Fullwood, Charles Waldon, Carol Thomas, Mary Ellen Young, Shannon Pressey, Folakemi T. Odedina, Brandon Snipe, Isela Villasenor. Unsilenced strength: Survivorship perspectives from Black prostate cancer survivors [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B013.