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Ashing, Kimlin

https://orcid.org/0000-0002-6209-508X

Mayo Clinic

City of Hope

Citations 23

Advancing Prostate Cancer Survivorship Through Transatlantic Consortium Science: The iCCaRE Initiative
Odedina, Folakemi T. , Dronca, Roxana , Ashing, Kimlin , Kaninjing, Ernest , Rotimi, Solomon O. , Ngufor, Che , Merriweather, Arnold , Gordon, Vinessa , Asto-Flores, Emelina , Adeniji, Kayode, Agboola, Emmanuel, Aliche, Uju, Aliyu, Usman M., Ashing, Kimlin Tam, Asiedu, Gladys, Badejo, Paul, Johnson, Kim Barbel, Beckford, Patrick , Blocker, Renaldo, Bolajoko, Opeyemi, Bonner, Timethia J, Breland, Ivey, Caballero, Amanda , Carter, Rickey, Cattnell, Alex, COBRAN, Ewan, Colon-Otero, Gerardo, Copland, John A., Phd, Getachew Dagne, Campos, Opeyemi C. De, Doty, Melissa, Dronca, Roxana, Erefah, Ebenezer, Falzon, Kaila, Francis, Damian, Fudge, Michelle, Fullwood, Dottington , Gainer, Jeffery, Glaser-Boivin, Dee, Hill, Antony, Hinsom, Rakenya, Iweala, Emeka J., Kaninjing, Ernie, Kase, Adam, Knutsen, Keith, Lee, Daniel, Leyva, Sandra Casanova, Lindeman, Carolyn R., Mahin, Collisa, Maniaci, Michael, Hew, Trevanne Matthews, Hew, Trevanne R. Matthews, Melton, Jada K., Merriweather, Arnold, Mitchell, Luisa, Moore, Cassandra, Ngufor, Che, Nolan, Lucia, Odedina, Abimbola, Odedina, Folakemi, Oladoyinbo, Catherine, Olasehinde, Esther, Onyia, Abimbola F., Popoola, Ademoola, Rotimi, Solomon O., Scales, Tracie, Sledge, Hanna, Thompson-Reeves, Jade, Toye, Oluwaseyi, Duarte, Claudia Valles, Voorhis, Kaitlin Van, Waldon, Charles F., Walsh-Childers, Kim , Williams, Christopher, Willis, Floyd , Wimberly, Quincy , Yahaya, Ayinde, Yates, PhD Clayton, Yost, Kathleen, Young, Mary Ellen , Zou, Tingyu, Ashing, Kimlin Tam , Rotimi, Solomon , Odedina, Folakemi , Kaninjing, Ernest T , Ngufor, Che G , Aliche, Uju, Badejo, Paul, Blocker, Renaldo, Bolajoko, Opeyemi , Cattnell, Alex, Cobran, Ewan K. , Colon-Otero, Gerardo, Copland, John A., Francis, Damian, Fudge, Michelle , Gainer, Jeffery, Gokara, Mahesh , Hinsom, Rakenya, Iweala, Emeka J., Knutsen, Keith, Lee, Daniel, Lindeman, Carolyn R., McCall, John , Melton, Jada K., Mitchell, Luisa, Olasehinde, Esther, Popoola, Ademoola, Reynolds, Jordan , Scales, Tracie, Sledge, Hanna, Thompson-Reeves, Jade, Toye, Oluwaseyi, Duarte, Claudia Valles, Voorhis, Kaitlin Van, Waldon, Charles F., Williams, Christopher, Yost, Kathleen, Zou, Tingyu

Cancer Research Communications | July 24, 2026 | Volume: No volume available | Issue: No issue available | Pages: No page available

10.1158/2767-9764.crc-26-0165 Get It

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.
Patient experience and quality of life in a decentralized cancer care model for advanced prostate cancer.
Dronca, Roxana , Hew, Trevanne Rose Matthews, Kase, Adam M. , Jones, Jeremy Clifton, Noble, Brie, Ashing, Kimlin Tan, Kaninjing, Ernest, Chen, Ruqin , Tan, Winston, Basu, Arnab, Confiado, Sunnie, Falzon, Kaila, Hew, Trevanne Matthews, Mazza, Gina L , Noble, Brie N. , Ashing, Kimlin , Kaninjing, Ernest , Tan, Winston , Confiado, Sunnie

Journal of Clinical Oncology | May 28, 2026 | Volume: 44 | Issue: 16_suppl | Pages: No page available

10.1200/jco.2026.44.16_suppl.e13611 Get It

e13611 Background: Decentralized cancer care models may reduce treatment burden for patients with advanced prostate cancer (CaP), particularly those facing mobility, transportation, of scheduling challenges. However, prospective patient-reported experience and quality-of-life data comparing home- versus clinic-based oncology care remain limited. Mayo Clinic Cancer CARE Beyond Walls (CCBW) is a patient-centered program designed to deliver selected standard-of-care cancer therapies in the home with virtual clinical oversight. This observational study evaluated patient-reported experience, feasibility, safety, and quality of life among men with advanced or metastatic CaP receiving care at home. Methods: Men with advanced/metastatic CaP receiving active standard-of-care therapy including hormone-based treatments, oral anticancer therapies, anti-bone resorptive agents, or intravenous chemotherapy who were participating in a CCBW randomized trial were enrolled into a companion observational study. After confirmation of treatment tolerance in clinic, patients received home-based care for 24 weeks (Arm A) or in-clinic care for 8 weeks followed by home-based care for 16 weeks (Arm B). Patient-reported outcomes were collected at baseline and Weeks 8, 16, and 24, using CAHPS-based measures and CCBW-specific surveys assessing overall cancer care experience, patient preference for site of care, comfort with home infusions, functional/symptom assessment and quality of life. Descriptive analyses were performed. Results: Eighteen participants were analyzed (Arm A n = 10; Arm B n = 8). Participants were medically stable, and predominantly insured by Medicare. Survey completion was 100% at baseline and 83% at all follow-up time points. At Weeks 16 and 24 when all respondents had received home-based care, 100% and 92% reported being “quite a bit” or “very much” comfortable receiving treatment at home. Communication with at-home and remote nursing teams was rated highly, and most respondents reported transition, scheduling, and equipment use easy or very easy. At Weeks 16 and 24, 45% and 40% of respondents reported improved quality of life from receiving home-based care, with no reports of worsening. No emergency department visits, hospitalizations, or urgent care visits occurred in either arm. Conclusions: In this prospective, observational study, home-based oncology care delivered through CCBW was feasible, safe, and associated with high patient satisfaction among men with advanced CaP receiving diverse systemic therapies. These findings support further evaluation and expansion of decentralized care integrating home-based treatment with virtual clinical oversight.
Abstract 2382: Achieving prostate cancer equity globally: Multinational advances from the iCCaRE consortium
Odedina, Folakemi T., Merriweather, Arnold, Dronca, Roxana , Colon-Otero, Gerardo, Popoola, Ademola Alabi, Asiedu, Gladys B. , Bolajoko, Opeyemi , COBRAN, Ewan, Asto-Flores, Emelina , Willis, Floyd B. , Williams, Christopher, Albertie, Monica, Fudge, Michelle, Toye, Oluwaseyi, Mahin, Collisa, Melton, J. Joseph, Kaninjing, Ernest , Rotimi, Solomon O. , Ashing, Kimlin , Popoola, Ademola , Cobran, Ewan K. , Williams, Christopher, Fudge, Michelle , Toye, Oluwaseyi

Cancer Research | April 3, 2026 | Volume: 86 | Issue: 7_Supplement | Pages: 2382-2382

10.1158/1538-7445.am2026-2382 Get It

Abstract Background: Black men across the African Diaspora experience a disproportionate burden of prostate cancer (CaP). The Inclusive Cancer Care Research Equity (iCCaRE) Consortium aims to eliminate CaP burden through global scientific collaboration, innovative research, community-engaged interventions, and next-generation workforce development. The primary objective for this Consortium was to optimize CaP diagnosis, treatment, and survivorship through research, research training and education, community engagement and community outreach. The Consortium integrates digital health technologies, community navigation, precision communication and precision science. Methods: Five full projects and one pilot project were launched across partner institutions in North America and Africa. Supported by multiple cores and services, the research activities included (1) implementation of a Point of Prostate Cancer Diagnosis Virtual Robot Assistant (PPCD-ViRA); (3) initiation of a cancer care at home trial; (4) migrant health studies of Caribbean and Sub-Saharan African immigrants; (5) expansion of genomic and metabolomic research; and (6) digital, psychosocial, and survivorship intervention development. Training and dissemination activities were deployed through iCCaRE TV, webinars, and community engagement programs including the Global Prostate Health Dialogue (Glo-PHD). Results: In one year, accomplishments included 45 presentations, 17 publications, 16 grant submissions, and 3 awards. The consortium delivered 408 live webinar engagements and reached more than 400 men globally through Glo-PHD. PPCD-ViRA was fully developed and prepared for clinical deployment (see https://www.youtube.com/watch?v=1mI-HS5R6sk). The African cohort expansion for genomic and metabolomic profiling was activated across several countries, with biospecimen collection underway. Media dissemination generated more than 15,000 views across platforms, including high-impact educational videos (see: www.youtube.com/@iCCaREConsortium). Training achievements included 13 early-career investigators and 7 trained prostate cancer advocates. Conclusions: In just one year, the iCCaRE Consortium Phase 2 made substantial progress toward transforming CaP equity globally. Through multidisciplinary science, digital innovation, and community partnerships, the consortium is building scalable infrastructure to address diagnosis experiences, treatment quality, and survivorship among Black men. Ongoing efforts will continue to advance precision medicine, culturally grounded interventions, and global capacity building. Citation Format: Folakemi T. Odedina, Arnold Merriweather, Roxana S. Dronca, Ernest T. Kaninjing, Solomon Rotimi, Gerardo Colon-Otero, Kimlin Ashing, Ademola A. Popoola, Gladys Asiedu, Opeyemi Bolajoko, Ewan COBRAN, Emelina Asto-Flores, Floyd Willis, Christopher Williams, Monica L. Albertie, Michelle Fudge, Oluwaseyi Toye, Collisa Mahin, Jada Melton, Inclusive Cancer Care Research Equity (iCCaRE) Consortium, Prostate Cancer Transatlantic Consortium (CaPTC). Achieving prostate cancer equity globally: Multinational advances from the iCCaRE consortium [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2026; Part 1 (Regular Abstracts); 2026 Apr 17-22; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2026;86(7 Suppl):Abstract nr 2382.
Abstract 880: Examining contextual distress and utility of a digital survivorship care toolkit.
Willis, Floyd B. , McCall, John R. , Song, Gaole , Adu-Fokuo, Douglas, Galdamez, Erika, Bedell, Fornati, Moore, Cassandra N., Cobran, Ewan K. , Yost, Kathleen J. , Bonner, Timethia , Dagne, Getachew , Merriweather, Arnold, Oladapo, Rotimi, Dronca, Roxana , Odedina, Folakemi T., Ashing, Kimlin , Williams, Christopher Michael , Ngufor, Che , Kaninjing, Ernest

Cancer Research | April 3, 2026 | Volume: 86 | Issue: 7_Supplement | Pages: 880-880

10.1158/1538-7445.am2026-880 Get It

Abstract Introduction: Attending to survivorship including distress in the contexts of social drivers (SDH) is critical but lacking. In response, this novel research on Black CaP survivors (CaPS) aims to measure SDH distresses and assess utility of a digital intervention to inform survivorship studies, practice and outcomes. Method: Informed by the Science of Survivorship, and our pilot study with multisectoral stakeholders, we assessed SDH and acceptability/utility of a digital Survivorship Care (SC) Toolkit. SCToolkit is a digitized whole-person care with guidance from multisectoral stakeholders e.g., clinicians and survivors. SCToolkit includes: ASCO informed treatment summary template for diagnostics, treatments, side effects, care team, genetics, and comorbidities, and patient active guide on survivorship concerns, provider communication, health advisories, survivorship care booklet, SDH FINDHELP resource, and survivorship videos. SCToolkit was delivered via survivors’ personal REDCap file, and can be uploaded to their EMR patient portal for easy-to-use survivorship roadmap accessible on smartphones, laptops, and computers. Motivational Interviewing was provided via Zoom to facilitate digital efficacy and SCToolkit use. Descriptive analyses were conducted using SAS. Citation Format: Kimlin Ashing, Floyd Willis, Christopher Williams, John McCall, Gaole Song, Douglas Adu-Fokuo, Erika Galdamez, Fornati Bedell, Cassandra N. Moore, EWAN COBRAN, Che Ngufor, Kathleen J. Yost, Timethia J. Bonner, Getachew Dagne, Arnold Merriweather, Ernest T. Kaninjing, Rotimi Oladapo, Roxana S. Dronca, Folakemi T. Odedina. Examining contextual distress and utility of a digital survivorship care toolkit [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2026; Part 1 (Regular Abstracts); 2026 Apr 17-22; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2026;86(7 Suppl):Abstract nr 880.
Editorial: Co-Creating Community-Living Interventions for Sustainable Cancer Control Programs: Meeting the Community Where They Are to Address Cancer Burden
Odedina, Folakemi T. , Thompson, Hayley , Ashing, Kimlin Tam , Ashing, Kimlin , Odedina, Folakemi

Cancer Control | January 9, 2026 | Volume: 33 | Issue: No issue available | Pages: No page available

10.1177/10732748251414201 Get It

Background: While much of cancer research has historically centered on innovations within clinical or laboratory settings, most of the factors shaping equity in cancer outcomes reside outside hospital walls—in neighborhoods, workplaces, and community networks. This reality underscores the need for community-involved and community-living interventions: programs co-designed and delivered within communities to meet people where they live, work, and socialize . Such interventions hold the greatest promise for sustainability because they are embedded in the daily lives, cultures, and resources of the populations they serve. Methods: This special collection brings together research that illuminates the power of community-centered and community co-led strategies for prevention, early detection, treatment, and survivorship across diverse settings. Results: The articles in this series illustrate how innovation, cultural humility, and local engagement can bridge persistent gaps in cancer care. Conclusion: Together, they highlight how communities themselves are essential partners in dismantling disparities and achieving lasting cancer control.
Abstract A024: Whole person survivorship: Multilevel distress in prostate cancer survivors from priority communities
Willis, Floyd B. , Song, Gaole , Bedell, Fornati, Moore, Cassandra N., Cobran, Ewan K. , Bonner, Timethia , Dagne, Getachew , Merriweather, Arnold, Kaninjing, Ernie, Oladapo, Rotimi, Dronca, Roxana , Dottington, Fullwood, Odedina, Folakemi T., Ashing, Kimlin , Williams, Christopher Michael , McCall, John , Ngufor, Che

Cancer Epidemiology, Biomarkers & Prevention | September 18, 2025 | Volume: 34 | Issue: 9_Supplement | Pages: A024-A024

10.1158/1538-7755.disp25-a024 Get It

Abstract Introduction: Advances in treatment have led to significant increases in survival rates, with over 90% of men diagnosed with prostate cancer (CaP) living at least five years. However, surviving cancer and its treatment often weigh a hefty survivorship burden. Men from the at-risk, vulnerable populations have the greatest burden. This study aims to understand distress among Black CaP survivors (CaPS) who bear the heaviest CaP burden. Method: We conducted key informant interviews with Motivational Interviewing techniques to collect CaPS demographic information, medical history, and multilevel distress evaluation. Descriptive analyses were conducted using SAS. Results: A total of 22 CaPS (aged from 48 to 72) were involved in the study. The majority of CaPS were African American (90.9%) and were diagnosed with stage 2 (31.8%) or stage 3 (36.4%). Over half of them (68.2%) were treated by surgery; most CaPS (90.9%) experienced side effects from prostate cancer treatments. CaPS reported distress in the following domains: Emotional well-being (e.g., Feeling sad, depressed or anxious, mental health) – 40.9%, Death of someone very close to you (e.g., family) – 36.4%, Alcohol use in close family – 36.4%, Experiences of discrimination or racism – 36.4%, Healthcare costs and coverage (e.g., medication, medical services, copay, insurance premium) – 31.8%, Loneliness and isolation – 27.3%, Serious injury/illness in close family (e.g., being a caregiver) – 27.3%, Money and finance – 22.7%, Using telehealth (e.g., using a smartphone or tablet for telephone or over the computer, clinic visit, patient portal, completing online forms, virtual classes) – 22.7%, Marriage, romantic relationships – 22.7%. Discussion: Black CaP survivors (CaPS) who bear the heaviest CaP burden are considered a priority population for research and care. These CaPS identified that their psychological distress was related to both familial and socioeconomic issues. The most endorsed life-stresses included emotional wellbeing, experiences of discrimination/racism, loneliness and isolation, healthcare cost/finance, family health, personal relationship, and telehealth use. The distress data as measured by the life-stress scale are invaluable in better documenting and addressing distress in interventions responsive to specific priority communities. Our novel findings suggest the relevance of grief and loss for these men. 36% reported death of someone close, and 27% indicated distress due to loneliness and isolation. Though the sample size was small, the distress data obtained may inform the science and practice of whole-person survivorship that consider distress emphasizing emotional wellbeing. The study is ongoing, and this abstract presents preliminary results; further muti-variate analyses will be conducted for the conference presentation. Citation Format: Kimlin Ashing, Floyd Willis, Chris Williams, John Mccall, Gaole Song, Fornati Bedell, Cassandra Moore, Ewan Cobran, Che Ngufor, Timethia Bonner, Getachew Dagne, Arnold Merriweather, Ernie Kaninjing, Rotimi Oladapo, Roxana Dronca, Fullwood Dottington, Folakemi Odedina. Whole person survivorship: Multilevel distress in prostate cancer survivors from priority communities [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr A024.
Abstract 994: Advancing health equity and reducing disparities in prostate cancer in Black men: iCCaRE
Bonner, Timethia , Cobran, Ewan K. , Odedina, Folakemi T., Merriweather, AJ, Kaninjing, Ernie, Willis, Floyd B. , Moore, Cassandra N., Oliver, Joanne, Bedell, Fornati, Ashing, Kimlin , Kaninjing, Ernie, McCall, John

Cancer Research | April 22, 2025 | Volume: 85 | Issue: 8_Supplement_1 | Pages: 994-994

10.1158/1538-7445.am2025-994 Get It

Abstract In the US and globally, Black men experience the highest prostate cancer burden among all racial and ethnic groups, underscoring the urgent need for research to guide the development and implementation of culturally tailored strategies aimed at reducing disparities and improving outcomes. In response, the Inclusive Cancer Care Research Equity (iCCaRE) Consortium was created to advance health equity and reduce disparities in prostate cancer. Importantly, a Survivorship Care Plan (SCP) is recommended to educate and empower patients, enabling them to be better informed about their cancer diagnosis, treatment, and survivorship care recommendations. To date, there is no SCP targeted to Black prostate cancer survivors (CaPS) who have the greatest disparities with the poorest survivorship outcomes (ACS F&F; AACR HD Report; Fullwood, 2024). Therefore, we aimed to develop a SCP tailored for Black men. Addressing the unique needs of Black men require a genuine bidirectional relationship between scientist and the community rooted in community engaged research (CER). The SCP was first informed by the literature (Bonner, 2024) and the ASCO template (canceradvocacy.org). With input from the iCCaRE leadership and the Partnership Engagement Services (PES) Core, the Whole Person SCP better responds to the informational, clinical and quality of life needs of Black Prostate Cancer survivors. Based on CER, we included 22 diverse, Black CaPs to further guide and tailor the iCCaRE. Our findings indicate that the iCCaRE Survivorship Care Plan (SCP) enhanced the ASCO template by incorporating and expanding several unique domains, including family history, care team contacts, follow-up and surveillance, symptoms, quality of life, survivor concerns, major comorbidities, health advisories, and culturally relevant resources, creating a comprehensive, whole-person SCP tailored specifically for Black men. It is crucial to continue to improve support for clinical research and advocate for Black men and their communities to reduce prostate cancer burden. Prostate cancer also needs to include incidence, mortality, and disparities for Black men to raise awareness of scarcely studied field of Black men and prostate cancer survivorship. Citation Format: Kimlin Tam Ashing, Timethia Bonner, Ewan K. Cobran, Folakemi Odedina, Aj Merriweather, Ernie Kaninjing, Floyd Willis, Cassandra Moore, Joanne Oliver, Fornati Bedell, John McCall. Advancing health equity and reducing disparities in prostate cancer in Black men: iCCaRE [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 994.
Remedying Black cancer disparities with clinical research prioritization
Ashing, Kimlin , Barrett, Nadine J. , Rhoads, Kim F. , Thompson, Hayley , Ragin, Camille , Thompson, Hayley S. , Ashing, Kimlin Tam , Barrett, Nadine , Nolan, Timiya S. , Sheppard, Vanessa B.

Cancer | March 10, 2025 | Volume: 131 | Issue: 6 | Pages: No page available

10.1002/cncr.35785 Get It

Community Outreach and Engagement (COE) ought to be prioritized, resourced, and supported to appropriately fulfill the Cures Act and tackle Catchment Community cancer burden and disparities. COE is not a person but the vision of community/public cancer prevention and control that surpasses both political and institutional leaders.
Abstract C042: iCCaRE qualitative interviews for Black prostate cancer survivors and quality of life
Morrison, J. Cayce, Song, Gaole , Bonner, Timethia , Dagne, Getachew , Merriweather, Arnold, Cobran, Ewan K. , Moore, Cassandra N., Bedell, Fornati, Oladapo, Rotimi, Willis, Floyd B. , Oliver, JoAnne S., Kaninjing, Ernie, Dronca, Roxana , Morrison, James, Ashing, Kimlin , McCall, John , Ngufor, Che

Cancer Epidemiology, Biomarkers & Prevention | September 21, 2024 | Volume: 33 | Issue: 9_Supplement | Pages: C042-C042

10.1158/1538-7755.disp24-c042 Get It

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.
The state of cancer-focused community outreach and engagement (COE): reflections of Black COE directors
Thompson, Hayley S. , Barrett, Nadine J. , Odedina, Folakemi T., Rhoads, Kim F. , Barrett, Nadine , Ashing, Kimlin , Baskin, Monica L. , Carter‐Harris, Lisa , Nolan, Timiya S. , Sheppard, Vanessa B. , Zeigler-Johnson, Charnita M

JNCI: Journal of the National Cancer Institute | June 15, 2024 | Volume: 116 | Issue: 10 | Pages: 1549-1554

10.1093/jnci/djae138 Get It

Abstract The requirement of community outreach and engagement (COE) as a major component of the National Cancer Institute (NCI) Cancer Center Support Grant has had an enormous impact on the way NCI-designated cancer centers identify, investigate, and address the needs of their catchment area (CA) communities. Given the wide-ranging diversity of our nation, COE’s scope of work (SOW) is extremely demanding and complex. Yet, COE is often marginalized and viewed as void of scientific methods when, in fact, it requires specialized scientific knowledge and a broad range of proficiencies. Black COE scientific directors may be particularly attuned to this marginalization as they have often confronted workplace inequities that resemble the health inequities observed within their cancer center’s CA. Thus, Black COE leaders are uniquely positioned to offer insight on the past, present, and future of COE. Key areas discussed include the low involvement of minoritized group members and those with appropriate expertise in national COE leadership; the lack of established, consistent criteria for evaluation of COE components and qualifications of evaluators; the need for substantial financial investment in COE; potential misalignment of community priorities and cancer center objectives; professional development and growth of COE staff and leaders; the expanding scope of COE across their respective cancer centers and CAs; and the need for center-wide involvement in COE and an “all-hands-on-deck” approach. These areas warrant thoughtful dialogue as COE evolves, for the benefit and success of all COE leaders. However, this dialogue must include diverse voices representing similarly diverse stakeholders at every level.