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22 citation(s) found for "Young, Mary".

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 | PMID 42497456 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.
Clarifying risk-factor associations with quantitative breast tumor features: a pooled analysis of 24 studies
Adams, Daniel , Hurson, Amber N. , Ahearn, Thomas U, Andrulis, Irene L, Antoniou, Antonis C, Auvinen, Päivi, Bane, Anita, González, Amy Berrington de , Bodelon, Clara, Bolla, Manjeet K. , Borrero, Maria , Brenner, Hermann, Brock, Ian W., Camp, Nicola J. , Cessna, Melissa H., Chanock, Stephen J, Chenevix-Trench, G, Copson, ER, Fh, Couch, Devilee, P, Easton, Douglas F, Eccles, Diana, Figueroa, Jonine D, Glendon, Gord, Hamann, U, Hartman, Mikael, Heemskerk-Gerritsen, Bernadette A M, Hodge, James M, Holleczek, Bernd, Hollestelle, A M, Mj, Hooning, Investigators, kConFab, Amor, David, Andrews, Lesley , Antill, Y , Rl, Balleine, Beesley, Jonathan, Bennett, Ian, Bogwitz, Michael, Bodek, Simon, Botes, Leon, Brennan, Meagan, Brown, Melissa, Buckley, Michael, Caldon, Liz, Campbell, Ian, Chakrabarti, Anannya , Chauhan, Deepa, Chauhan, Manisha, Christian, Alice, Cohen, Paul, Colley, Alison, Cui, James, Courtney, Eliza, Cummings, Margaret, Delatycki, Martin, Dickson, Rebecca, Dixon, Joanne, Duijf, Pascal, Edwards, Stacey, Farshid, Gelareh , Fellows, AM, Fenton, Georgina, Field, Michael, Flanagan, James, Fong, Peter, Forrest, Laura, Fox, Stephen, French, Juliet , Friedlander, Michael, Gattas, Mike, George, Peter, Greening, Sian, Harris, Marion, Harraka, Philip, Hayward, Nick, Hoskins, Cass , Hunt, Clare, James, Paul, Jenkins, Mark, Kidd, Alexa, Koehler, Jessica, Kollias, J, Lakhani, Sunil, Lawrence, Mitchell, Lee, Jason , Li, Shuai, Lindeman, Geoff, Lippey, Jocelyn, Lipton, Lara, Loi, Sherene, Mann, Graham, Marsh, Deborah, McLachlan, Sue Anne, Reed, Amy McCart, Milne, Roger, Nightingale, Sophie , O’Connell, Shona, O’Sullivan, Sarah, Reilly, Robert O', Ortega, David Gallego, Pachter, Nick, Pang, Jia-Min, Pathak, Gargi, Patterson, Briony, Phillips, Kelly, Pieper, Ellen, Ramus, Susan, Rickard, Edwina, Ragunathan, Abi, Robinson, Bridget, Skandarajah, Anita, Salisbury, Elizabeth, Saunders, Christobel, Saunus, Jodi, Scott, Rodney, Scott, Clare, Sexton, Adrienne, Shaw, Joanne, Shelling, Andrew, Srinivasa, Shweta , Simpson, Peter, Mc, Southey, Spurdle, Amanda, Taylor, Jessica, Taylor, Renea, Thorne, Heather, Trainer, A H, Tucker, Kathy , Visvader, Jane, Walker, Logan, Williams, Rachael, Winship, I, Young, Mary Ann, Zaheed, Milita , Investigators, S On Behalf Of The Chlovis Study, Tan, Veronique Kiak Mien , Lim, Geok Hoon, Tan, Ern Yu , Tan, Su-Ming, Iau, Philip Tsau Choong , Jakubowska, A, Jones, Michael E. , Jones, Louise , Jones, Brandt, Jung, Audrey, Kaaks, Rudolf, Keeman, Renske , Lawrence, Scott, Li, J M, Lubiński, J, Mannermaa, Arto, Manoochehri, Mehdi, Martens, John W M, Mesker, Wilma E, Muhammad, Noor , Obi, Nadia, Olson, Janet E, Patel, Alpa V, Prajzendanc, Karolina , Ruddy, Kathryn J, Safizadeh, Fatemeh , Schöttker, Ben, Tengström, Maria , Le, Teras, Timmermans, M, Tollenaar, RA, Vachon, Celine M, Wang, Q, Yang, Xiaohong R, Zamora, M Pilar, Chang-Claude, Jenny, Schmidt, M K, Pharoah, Paul D P, Abubakar, Mustapha, Eccles, Diana , Ahearn, Thomas U. , Eccles, Diana , Jones, Michael E , Jones, J. Louise , Berrington de Gonzalez, Amy , Antoniou, Antonis C. , Bane, Anita, Behrens, Sabine , Białkowska, Katarzyna , Bodelón, Clara , Brenner, Hermann , Broeks, Annegien , Chanock, Stephen Jacob , Chenevix‐Trench, Georgia , Copson, Ellen , Couch, Fergus J, Cox, Angela , Cross, Simon S. , Devilee, Peter , Dunning, Alison M. , Easton, Douglas F. , Figueroa, Jonine D. , Glendon, Gord, González‐Neira, Anna , Hartikainen, Jaana M. , Hartman, Mikael , Heemskerk‐Gerritsen, Bernadette A. M. , Ho, Peh Joo , Hodge, James M. , Holleczek, Bernd , Hollestelle, Antoinette , Hooning, Maartje J. , Investigators, kConFab, Balleine, Rosemary L. , Bennett, Ian, Bogwitz, Michael R. , Bodek, Simon , Botes, Leon P., Buckley, Michael , Cohen, Paul A. , Crook, Ashley , Courtney, Eliza , Dawson, Sarah‐Jane , DeFazio, Anna , Delatycki, Martin B. , Duijf, Pascal H. G. , Fellows, Andrew, Fenton, Georgina L. , Flanagan, James M. , Forrest, Laura Elenor , Friedländer, Michael , Harraka, Philip A. , Kidd, Alexa, Kollias, James, Lakhani, Sunil R. , Lawrence, Mitchell, Lindeman, Geoffrey J. , Lippey, Jocelyn , Loi, Sherene , Reed, Amy E. McCart , Milne, Roger L , Gallego‐Ortega, David , Pathak, Gargi, Pearn, Amy , Robinson, Bridget A. , Skandarajah, Anita Rohini , Salisbury, Elizabeth, Saunders, Christobel , Saunus, Jodi M. , Savas, Peter Stephen , Sexton, Adrienne , Shelling, Andrew Neil , Simpson, Peter, Spurdle, Amanda B. , Visvader, Jane E. , Williams, Rachael, Tan, Bien‐Keem , Lim, Geok Hoon , Kaaks, Rudolf , Lawrence, Scott M. , Lissowska, Jolanta , Mannermaa, Arto , Manoochehri, Mehdi, Mesker, Wilma E. , Mulligan, Anna Marie , Obi, Nadia , Olson, Janet E. , Osório, Ana , Ottewell, Penelope Dawn , Patel, Alpa V , Pita, Guillermo , Rashid, Muhammad Usman , Ruddy, Kathryn J. , Schöttker, Ben , Seibold, Petra , Tapper, William , Teras, Lauren R , Timmermans, Mieke, Vachon, Celine M. , Wesseling, Jelle , Yadav, Siddhartha , Chang‐Claude, Jenny , Schmidt, Marjanka K. , Abubakar, Mustapha , García‐Closas, Montserrat

JNCI: Journal of the National Cancer Institute | July 18, 2026 | Volume: No volume available | Issue: No issue available | Pages: No page available

10.1093/jnci/djag244 | PMID 42498670 Get It

Abstract Background Breast cancer is etiologically heterogeneous, but which risk factors differ in their associations across tumor subtypes remains unclear. We conducted a large, pooled analysis to evaluate independent, dose-response associations between breast cancer risk factors and quantitative tumor features. Methods Analyses of 15,731 invasive breast cancers from 24 studies evaluated associations (p-trend) between reproductive and hormonal factors, body mass index (BMI), alcohol, smoking, and family history in relation to quantitative immunohistochemistry measures on tissue microarrays (ER, PR, HER2, KI67, TP53) and tumor grade. Analyses in a subset of 10 population-based studies estimated subtype-specific odds ratios (ORs) comparing cases to controls. A Bayesian False Discovery Probability (BFDP) <0.2 was used to identify associations with strong statistical evidence. Results Nulliparity and later age at menopause were associated with higher ER-positivity (p-trend=0.021 and 0.001, respectively), with corresponding OR[ER+] (95% CI) = 1.49 (1.16-1.90) for nulliparous vs. parous and 1.07 (1.03-1.11) per 5 years. Current combined menopausal hormone therapy (MHT) use was associated with lower grade (p-trend<0.001), with OR [grade1] = 3.37 (2.69-4.21) for current vs. never users. Higher BMI was associated with lower ER-positivity and higher grade in premenopausal women (p-trend<0.001 and <0.001), with OR[ER+] = 0.80 (0.74-0.87) and OR[grade1] = 0.75 (0.63-0.88) per 5 units, and with higher PR-positivity and higher grade in postmenopausal women (p-trend<0.001 and <0.001), with OR[PR+] = 1.08 (1.03-1.14) and OR[grade 3] = 1.10 (1.04-1.17) per 5 units. Conclusion This pooled analysis of 15,731 cases showed that nulliparity, age at menopause, MHT, and BMI have independent, dose-response associations with ER, PR, and grade, clarifying patterns of etiologic heterogeneity. Associations with HER2, KI67 and TP53, or other risk factors did not meet our threshold for strong evidence.
Abstract 6306: Novel application of the iCCaRE consortium virtual reality assistant (ViRA) to support Black men at the point of prostate cancer diagnosis
Odedina, Folakemi T., Williams, Christopher, Young, Mary Ellen , Willis, Floyd B. , Kase, Adam M. , Merriweather, Arnold, Asto-Flores, Emelina , Glaser-Boivin, Dee M., Melton, J. Joseph, Albertie, Monica, Fudge, Michelle, Wimberly, Quincy A., Ngufor, Che , Williams, Christopher, Glaser-Boivin, Dee, Fudge, Michelle , Wimberly, Quincy

Cancer Research | April 3, 2026 | Volume: 86 | Issue: 7_Supplement | Pages: 6306-6306

10.1158/1538-7445.am2026-6306 Get It

Abstract Background: Black men carry a disproportionate prostate cancer (CaP) burden and often experience significant psychosocial distress at the point of prostate cancer diagnosis (PPCD). Many report emotional shock, uncertainty, and limited access to culturally competent guidance, which can negatively affect treatment decisions and long-term survivorship. To address these needs, we developed the PPCD Virtual Reality Assistant (ViRA), an immersive, AI-enabled intervention co-designed with Black CaP survivors. ViRA delivers tailored psycho-oncology support, emotional guidance, and navigation of social determinants of health (SDOH) within virtual reality environments. This study evaluated the feasibility, acceptability, and usability of the PPCD ViRA (NCT06535802). Methods: ViRA was developed through a structured, seven-step co-design process with survivors, integrating mobile immersive technologies, SDOH navigation, and culturally grounded psycho-oncology content. Personalization was enabled through AI-driven predictive analytics and a recommendation engine. Alpha testing assessed initial usability and acceptability among 10 participants (seven team members and three Black CaP survivors). Beta testing with 24 Black men in Florida examined feasibility and preliminary efficacy. Results: A demonstration of ViRA is available (https://www.youtube.com/watch?v=1mI-HS5R6sk). Alpha testing indicated strong usability, positive emotional engagement, and clear promise for enhancing support at the PPCD. In Beta testing, participants varied in age; most were married (58.3%), held a bachelor’s degree (45.8%), were retired (45.8%), and had a family history of cancer (83.3%). ViRA use was associated with increased engagement and reduced distress across participants. Overall, 74% rated ViRA as “excellent,” while the remainder rated it as “good” or “very good.” More than 90% reported being “very satisfied,” with the rest indicating satisfaction. Conclusions: Findings demonstrate high feasibility, acceptability, and cultural relevance of the PPCD ViRA for supporting Black men at diagnosis. Lessons learned highlight the need for culturally embedded design, emotional timing, community co-creation, flexible delivery formats, and strong community partnerships to advance digital health equity. The refinement and larger-scale validation to establish clinical utility and readiness for implementation is ongoing (NCT07126548). Citation Format: Folakemi T. Odedina, Che Ngufor, Christopher Williams, Mary Ellen Young, Floyd Willis, Adam M. Kase, Arnold Merriweather, Emelina Asto-Flores, Dee M. Glaser-Boivin, Jada Melton, Monica L. Albertie, Michelle Fudge, Quincy Wimberly, Inclusive Cancer Care Research Equity (iCCaRE) Consortium, Prostate Cancer Transatlantic Consortium (CaPTC). Novel application of the iCCaRE consortium virtual reality assistant (ViRA) to support Black men at the point of prostate cancer diagnosis [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 6306.
Abstract 6307: Feasibility of a survivorship app for black prostate cancer survivors: Results from a 12-week mHealth pilot study
Kumar, Gaurav, Ghasemi, Parisa , Zhao, Yan D., Dwyer, Kathleen, Kaninjing, Ernie, Young, Mary Ellen , Sabrina, Dickey, Bolajoko, Opeyemi , Ogunsanya, M., Dwyer, Kathleen , Kumar, Gaurav , Nagykáldi, Zsolt , McIntosh, Andrew G. , Dickey, Sabrina L. , Morton, Daniel J. , Kendzor, Darla E. , Ogunsanya, Motolani E.

Cancer Research | April 3, 2026 | Volume: 86 | Issue: 7_Supplement | Pages: 6307-6307

10.1158/1538-7445.am2026-6307 Get It

Abstract Introduction: Black prostate cancer (CaP) survivors experience unique quality-of-life (QoL) and recovery challenges after treatment compared with their White counterparts. Smartphone-delivered mobile health interventions offer promising avenues for symptom tracking and lifestyle changes; but their feasibility, user engagement, and acceptability in this population remain unclear. This study assessed the feasibility, engagement, and preliminary impact of the Survivorship App for Ethnically Diverse Black Prostate Cancer Survivors (SAFE-CaPS), designed to improve self-monitoring behaviors and health outcomes. Methods: Nine Black CaP survivors (seven U.S.-born, one African-born, and one Caribbean-born) participated in a 12-week pilot study of SAFE-CaPS. The app provided daily prompts for symptoms (pain, sleep, fatigue, sexual function, anxiety, depression) and behavior tracking (physical activity, diet), brief self-management support, and physician alerts for severe symptom reports. Mental health (GAD-7 and PHQ-9) and QoL (FACT-P) were assessed at baseline and after 12 weeks. Feasibility was evaluated based on adherence rates (i.e., ≥70% of daily diary entries). Engagement and acceptability were assessed via app analytics and qualitative interviews on usability and cultural relevance. Participants were compensated up to $125 via Greenphire ClinCard. Surveys were analyzed with SPSS v29, and interviews with Atlas.ti v23. Results: Participants’ median age at diagnosis was 56 years; six had a positive family history of CaP, and four had undergone radical prostatectomy. Four participants met the feasibility threshold, and eight completed the study. Most daily entries reflected mild pain, fatigue, bowel and urinary issues, and generally good sleep. Several participants frequently reported severe sexual dysfunction, and most diary responses indicated <20 minutes of physical activity per day. Fruit/vegetable intake was low, with about half of daily responses showing 1-2 servings. At baseline, eight participants had minimal anxiety, while five had moderate depression. Overall, QoL improved from week 1 to week 12 in physical, emotional, and functional well-being, while social well-being declined over time. Interviews emphasized the app’s user-friendly design, ease of navigation, and acceptability as key strengths, with several participants highlighting its simplicity and ease of use, with recommendations to reduce repetitive items and address minor technical issues. Conclusions: SAFE-CaPS was feasible and well accepted. Sexual dysfunction, low physical activity, and moderate depression emerged as key concerns, heightening the need for integrated mental health, activity support, and stronger engagement strategies in future mHealth interventions. Citation Format: Gaurav Kumar, Parisa Ghasemi, Yan D. Zhao, Zsolt Nagykaldi, Kathleen A. Dwyer, Andrew G. McIntosh, Ernie Kaninjing, Mary E. Young, Dickey Sabrina, Daniel Morton, Opeyemi Bolajoko, Darla E. Kendzor, Motolani Ogunsanya. Feasibility of a survivorship app for black prostate cancer survivors: Results from a 12-week mHealth pilot study [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 6307.
Abstract 2483: Survivorship and sexual health: What we learned from Black men in community town halls
Ghasemi, Parisa , Kumar, Gaurav, Ayanambakkam, Adanma, Siston, Amy, Neil, Jordan M., Alexander, Adam, Zhao, Yan D., Dwyer, Kathleen, Young, Mary Ellen , Bolajoko, Opeyemi , Ogunsanya, M., Dwyer, Kathleen , Kumar, Gaurav , Kaninjing, Ernest , Ayanambakkam, Adanma , Nyame, Yaw A. , Neil, Jordan M. , McIntosh, Andrew G. , Nagykáldi, Zsolt , Dickey, Sabrina L. , Morton, Daniel J. , Kendzor, Darla E. , Ogunsanya, Motolani E.

Cancer Research | April 3, 2026 | Volume: 86 | Issue: 7_Supplement | Pages: 2483-2483

10.1158/1538-7445.am2026-2483 Get It

Abstract Background: Prostate cancer (CaP) is among the most common cancers in U.S. men, with Black men experiencing a 1.7-fold higher incidence and nearly twice the mortality rate compared with non-Hispanic White men. While early detection has improved survival, differences remain in recovery and quality of life (QoL). Sexual dysfunction after treatment affects identity, relationships, and well-being, yet stigma, cultural norms, and limited access to patient-centered care prevent open discussion. Few initiatives address the intersection of identity, stigma, and survivorship in this population. Community town halls provide a trusted, culturally responsive space for shared learning, peer connection, and open dialogue on survivorship and sexual health. Methods: Two community-engaged CaP town halls were convened by the Multidisciplinary Health Outcomes Research and Economics (MORE) Lab at the University of Oklahoma Health Campus (OUHC) to explore survivorship issues among Black CaP survivors. The first, held virtually in June 2024, included watch parties in Georgia and Texas. The second, in November 2024, was hybrid, hosted at OUHC and via Teams with a watch party at the Willa D. Johnson Recreation Center, a community center in Oklahoma City. Panelists included oncologists, psychologists, survivors, partners, and Community Advisory Board members. Both town halls featured survivor storytelling, provider Q&A, and interactive discussion. Post-event surveys captured demographics, satisfaction, and impact. Open-discussion transcripts were analyzed using Braun and Clarke’s reflexive thematic analysis, guided by a constructivist framework. Results: A total of 124 participants attended both town halls. Survey respondents (n=17; 13.7%) provided demographic and satisfaction data; remaining insights came from all participants who engaged in open dialogue. Respondents ranged in age from 19-76 years (mean=48.7 ± 21.8). Of the 17 respondents, 93% rated the events as very good or excellent; 23.5% were CaP survivors, all identifying as Black. Five themes emerged: (1) Masculinity, stigma, and silence limit help-seeking; (2) Sexual dysfunction and identity loss cause major emotional burdens; (3) Navigation challenges highlight systemic barriers; (4) Spousal and psychological support aid coping; and (5) Survivorship empowerment. Participants valued hearing “real stories from real men,” validating their experiences. Conclusions: Community town halls are a feasible and culturally relevant strategy to engage Black CaP survivors in survivorship and sexual health discussions. By centering lived experiences and facilitating two-way communication between survivors, clinicians, and researchers, these events build trust and reduce stigma. Future work will assess changes in knowledge, engagement, and confidence in care navigation and explore scaling this community-academic model to improve survivorship QoL. Citation Format: Parisa Ghasemi, Gaurav Kumar, Ernest T. Kaninjing, Adanma Ayanambakkam, Yaw A. Nyame, Amy Siston, Jordan M. Neil, Adam C. Alexander, Andrew G. McIntosh, Yan Zhao, Zsolt Nagykaldi, Kathleen A. Dwyer, Mary Ellen Young, Sabrina Dickey, Daniel Morton, Opeyemi Bolajoko, Darla E. Kendzor, Motolani E. Ogunsanya. Survivorship and sexual health: What we learned from Black men in community town halls [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 2483.
Abstract 1248: Perspectives on cancer survivorship: Voices of family caregivers.
Bolajoko, Opeyemi , Melton, J. Joseph, Young, Mary Ellen , Odedina, Folakemi T.

Cancer Research | April 3, 2026 | Volume: 86 | Issue: 7_Supplement | Pages: 1248-1248

10.1158/1538-7445.am2026-1248 Get It

Abstract Background: Cancer survivorship requires significant contributions from family caregivers at home. This role can be burdensome because family members play a vital role in the physical, functional, and emotional well-being of patients diagnosed with cancer. Although optimum care throughout the care continuum requires significant caregiver support at home, family caregivers' contribution to survivorship care is usually neglected. We provide the preliminary outcomes of caregivers' challenges and experiences in providing care and survivorship support to Black cancer survivors. We also identified ways to provide support for family caregivers. Methods: This qualitative study obtained information from 8 caregivers who care for Black cancer survivors who have completed treatment in the United States. The study used a phenomenological design to obtain data from participants. In-depth interviews focused on participants' lived experiences caring for Black patients with cancer. The study captured caregivers' personal stories of how they dealt with diagnosis, feelings, emotions, reactions, understanding of the disease, prognosis, and treatment options and decision process, as well as survivorship of their care recipients. All interviews were video recorded and transcribed verbatim. The transcript of each participant's interview was reviewed, analyzed, and coded, with emerging themes interpreted. Results: The major cahllenges identified were (1) lack of knowledge of cancer, the disease and treatment course before the diagnoses; (2) home care burden, which include the challenges of combining care for a sick person at home with caring for other members of the family and taking care of domestic chores; (3) patient care navigation, including identifying healthcare professional for specialist care, adequate health insurances, scheduling doctors' appointment, transportation, insurance and treatment paperwork; (4) financial challenges, especially keeping up with job, family income reduction, increase out of pocket spendings, as well as expensive drugs and treatment co-pays. Most of the caregivers agreed that they neglected their personal health while caring for their care recipient. All caregivers wished they received more information and training on how to care for a patient with cancer. Possible solutions identified were care packets providing information on cancer and how to provide care at home, patient care navigation to social determinants of health and financial support programs, counselling for mental health and emotional support, peer support groups for caregivers, health checks, and a contact to call for support. Conclusion: Caring for cancer patients at home is very challenging; having a care packet and caregiving training is important to support survivorship and reduce the caregiving burden experienced by family caregivers. Citation Format: Opeyemi Oreoluwa Bolajoko, Jada Melton, Mary Ellen Young, Folakemi T. Odedina. Perspectives on cancer survivorship: Voices of family caregivers [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 1248.
Shaping Prostate Cancer Across the Care Continuum Among Black Men: The Role of Culture and Family Dynamics
Fullwood, Dottington , Pressey, Shannon, Bolajoko, Opeyemi , Oliver, JoAnn S. , Melton, Jada, Wimberly, Quincy A., Young, Mary Ellen , Odedina, Folakemi T., Wimberly, Quincy , Melton, Jada

Qualitative Health Research | July 31, 2025 | Volume: No volume available | Issue: No issue available | Pages: No page available

10.1177/10497323251359953 | PMID 40743533 Get It

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 4011: Health maintenance reframed: Insights from Black prostate cancer survivors on prioritizing wellbeing
Fullwood, Dottington , Young, Mary Ellen

Cancer Research | April 21, 2025 | Volume: 85 | Issue: 8_Supplement_1 | Pages: 4011-4011

10.1158/1538-7445.am2025-4011 Get It

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.
Characterization of Factors Associated With Death in Deceased Patients With Mitochondrial Disorders
Ivaniuk, Alina , Anselm, Irina , Bowen, Aaron B. , Cohen, Bruce H. , Eminoğlu, Fatma Tuba , Estrella, Jane , Gallagher, Renata C. , Gannon, Jennifer , Gorman, Gráinne S. , Greene, Carol L. , Haas, Richard , Kapoor, Seema , Karaa, Amel , Koenig, Mary Kay , Kornblum, Cornelia , Lichter‐Konecki, Uta , Lopriore, Piervito , McFarland, Robert , Moe, Aye , Ng, Yi Shiau , Saneto, Russell P. , Scaglia, Fernando , Tarnopolsky, Mark A. , Walker, Melissa , Group, as the Hong Kong Mitochondrial Diseases Interest, Fung, Cheuk Wing , Wong, Tsz-sum, Belaramani, Kiran , Chan, Chun-kong , Chan, Wing-ki, Chan, Wai-lun Larry, Cheung, H. M. E., Cheung, Ka-yin, Chang, Richard Shek‐kwan , Cheung, Sing-ngai, Cheung, Tsz-Fung, Cheung, Yuk-fai, Chong, Shuk-ching Josephine, Chow, Chi-kwan Jasmine , Fan, Florence , Fok, Wai-ming Joshua , Fung, Tsui-hang Sharon , Hui, Kwok-fai, Hui, Ting-hin, Ko, Chun Hung, Kwan, Min-chung, Kwok, Anne Mei Kwun , Kwok, Sung-shing Jeffrey, Lai, Moon-sing, Lam, Yau-on, Lam, Ching‐Wan , Lau, Ming-chung, Law, Hiu-Fung, Lee, Wing‐Cheong , Leung, Kin-hang, Leung, Kit-yan, Li, Siu-hung, Ling, Tsz-ki, Liu, Kam Tim , Lui, Colin H. T., Luk, Ching-on, Luk, Ho‐Ming , Ma, Che-Kwan, Ma, Karen , Ma, Kam-hung , Mew, Yuen-ni, Mo, Alex, Hg, Sui-Fun, Poon, Grace Wing-kit , Sheng, Bun , Szeto, Cheuk-ling Charing, Tai, Shuk‐Mui, Tang, Jing-Liang, Tse, Choi-ting Alan , Tsung, Li-yan Lilian, Wong, Ho-ming June, Wong, Wing-yin Winnie, Wong, Kwok-kui, Wong, Suet-na Sheila , Wong, Chun-nei Virginia, Wong, Wai-shan Sammy, Wong, Chi-kin Felix, Wu, Shun-Ping, Wu, Hiu-fung Jerome , Yau, Man-Mut, Yau, Eric Kin Cheong , Yeung, Wai Lan , Yeung, Hon‐Ming Jonas , Yip, Kin-keung Edwin, Young, Pui-hong Terence, Yuan, Gao , Yuen, Yuet‐Ping , Yuen, Chi-lap, Anselm, Irina A , Bowen, Aaron , Ganetzky, Rebecca D , Gannon, Jennifer , Gorman, Grainne S , Greene, Carol , Gropman, Andrea L , Haas, Richard H , Hirano, Michio , Kapoor, Seema , Karaa, Amel , Koenig, Mary Kay , Kornblum, Cornelia , Kose, Engin , Larson, Austin A , Lichter-Konecki, Uta , Lopriore, Piervito , Mancuso, Michelangelo , McFarland, Robert , Moe, Aye Myat , Ng, Yi Shiau , Saneto, Russell P , Scaglia, Fernando , Sue, Carolyn M , Tarnopolsky, Mark , Walker, Melissa A , Parikh, Sumit , Cheuk-Wing, Fung , Wong, Tsz-Sum , Belaramani, Kiran , Chan, Chun-Kong , Chan, Wing-Ki , Chan, Wai-Lun Larry , Cheung, Hon-Wing , Cheung, Ka-Yin , Chang, Shek-Kwan , Cheung, Sing-Ngai , Cheung, Tsz-Fung , Cheung, Yuk-Fai , Chow, Chi-Kwan Jasmine , Chung, Hon-Yin B , Fan, Sin-Ying Florence , Fok, Wai-Ming Joshua , Fung, Tsui-Hang Sharon , Hui, Kwok-Fai , Hui, Ting-Hin , Hui, Joannie , Ko, Chun Hung , Kwan, Min-Chung , Kwok, Mei-Kwan Anne , Kwok, Sung-Shing Jeffrey , Lai, Moon-Sing , Lam, Yau-On , Lam, Ching-Wan , Lau, Ming-Chung , Law, Chun-Yiu Eric , Law, Hiu-Fung , Lee, Wing-Cheong , Leung, Kin-Hang , Leung, Kit-Yan , Li, Siu-Hung , Liu, Kam-Tim Timothy , Lo, Fai-Man , Lui, Colin , Luk, Ho-Ming , Ma, Che-Kwan , Ma, Karen , Ma, Kam-Hung , Mo, Alex , Hg, Sui-Fun , Poon, Wing-Kit Grace , Sheng, Bun , Tse, Choi-Ting Alan , Wong, Ho-Ming June , Wong, Wing-Yin Winnie , Wong, Kwok-Kui , Wong, Suet-Na Sheila , Wong, Chun-Nei Virginia , Wong, Wai-Shan Sammy , Wu, Hiu-Fung Jerome , Yau, Kin-Cheong Eric , Yeung, Wai-Lan , Yeung, Hon-Ming Jonas , Yip, Kin-Keung Edwin , Young, Pui-Hong Terence , Yuan, Gao , Yuen, Yuet-Ping Liz , Ivaniuk, Alina , Cohen, Bruce H , Ganetzky, Rebecca , Larson, Austin , Morava, Éva , Sue, Carolyn M. , Parikh, Sumit , Group, as the Hong Kong Mitochondrial Diseases Interest, Fong, Ka-Wing, Lee, Han‐Chih Hencher , Tang, Jing-Liang, Wu, Hui-Jun

Neurology | January 30, 2025 | Volume: 104 | Issue: 4 | Pages: No page available

10.1212/wnl.0000000000209779 | PMID 39883904 Get It

From Unheard to Empowered: Utilizing Communication Accommodation Theory to Address Black Men’s With Prostate Cancer Healthcare Preferences
Fullwood, Dottington , Bolajoko, Opeyemi , Gunderson, Justine, Ramirez-Rivera, Caleb O. , Pressey, Shannon, Nosbush, Kelly, Young, Mary Ellen , Asiedu, Gladys B. , Fallon, Elizabeth, Bolajoko, Opeyemi , Ramirez-Rivera, Caleb O , Young, Mary Ellen , Krieger, Janice, Asiedu, Gladys, Fallon, Elizabeth, Krieger, Janice L.

Cancer Control | October 17, 2024 | Volume: 31 | Issue: No issue available | Pages: No page available

10.1177/10732748241293987 | PMID 39865591 Get It

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.