Song, Gaole

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.

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 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.