This study addresses the critical issue of survivorship care for Black prostate cancer survivors. The aim was to explore their awareness of survivorship care plans to improve prostate cancer care and ...survivorship within this high-risk group.PURPOSEThis study addresses the critical issue of survivorship care for Black prostate cancer survivors. The aim was to explore their awareness of survivorship care plans to improve prostate cancer care and survivorship within this high-risk group.Utilizing a thematic analysis approach, we conducted in-depth interviews focused on analyzing post-treatment experiences of Black prostate cancer survivors by applying interpretive explanations to data collected from participants.METHODSUtilizing a thematic analysis approach, we conducted in-depth interviews focused on analyzing post-treatment experiences of Black prostate cancer survivors by applying interpretive explanations to data collected from participants.Participants reported a significant gap in survivorship care plan communication post-treatment, as these plans were seldom discussed. Survivors highlighted the adoption of post-treatment strategies and self-education as means to enhance their comprehension of the survivorship process. Black survivors demonstrated an intrinsic motivation, after feeling "discarded," to find suitable resources to enhance their survivorship care for a better quality of life.RESULTSParticipants reported a significant gap in survivorship care plan communication post-treatment, as these plans were seldom discussed. Survivors highlighted the adoption of post-treatment strategies and self-education as means to enhance their comprehension of the survivorship process. Black survivors demonstrated an intrinsic motivation, after feeling "discarded," to find suitable resources to enhance their survivorship care for a better quality of life.The prioritization of post-treatment care for Black prostate cancer survivors is important. By offering comprehensive post-treatment education, improving symptom transparency, and establishing safe spaces for open discussion, the quality of life of Black survivors may be substantially improved.CONCLUSIONThe prioritization of post-treatment care for Black prostate cancer survivors is important. By offering comprehensive post-treatment education, improving symptom transparency, and establishing safe spaces for open discussion, the quality of life of Black survivors may be substantially improved.There is a pressing need for dynamic post-treatment care coordination tailored to Black prostate cancer survivors. A lack of crucial post-treatment education for this population that experiences disproportionate burden of prostate cancer may exacerbate cancer health disparities. Addressing this care coordination gap may improve support systems, survivor well-being, and better cancer outcomes.IMPLICATIONS FOR CANCER SURVIVORSThere is a pressing need for dynamic post-treatment care coordination tailored to Black prostate cancer survivors. A lack of crucial post-treatment education for this population that experiences disproportionate burden of prostate cancer may exacerbate cancer health disparities. Addressing this care coordination gap may improve support systems, survivor well-being, and better cancer outcomes.
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.
Abstract
The day I received news of my prostate cancer diagnosis time paused for a minute. My heart was heavy, and my mind racing and my soul appeared to leave my body as the physician kept talking. ...I’m looking at this doctor and having internal conversations with myself about dying. My attention switched from listening to reflecting to Fred Sanford holding his heart and saying “Elizabeth, I am coming to join you”, but my wife was right next to me holding my hand. The embrace of our interlocked fingers without saying a word to one another assured both of us this too shall pass. My knowing I had support encouraged me to begin educating myself about the science of survivorship.
The presence of prostate cancer resources was absent in my community. I began reading information online to grasp a better understanding of this disease. The information gained encouraged me to request a second opinion from another oncologist. I was amaze by the difference in opinion about treatment options. I felt the urge to identify and specifically speak with other Black men going through this process. Everywhere I looked for support groups felt like removing my hands from pocket and watching lent flee from my fingers. What did I do? I registered my own prostate cancer support group with the state of Florida. The group grew from a few to 20 Black men across major metropolitan cities in Florida. These group meetings extended to men leading groups in their communities. I joined the Prostate Health Education Network as the Regional Ambassador to promote prostate awareness and clinical trials. My advocacy presence in the state of Florida led to Dr. Odedina and I crossing paths to champion elimination of prostate cancer health disparities for Black men.
I am a Citizen Scientist in the lab of Dr. Odedina working on the inclusive cancer care and research equity for Black men consortium. I have co-authored publications, co-presented at conferences, served on research projects, and contributed to grant funding totaling over $25 million as a citizen scientist. Currently working on a Department of Defense funded grant focusing on the point of prostate cancer diagnosis. The project has completed several events to dispel myths about participation in clinical research while discussions about early detection is vital to improve survivorship.
The reward from this work is knowing I am helping create spaces for Black men never to travel this journey alone. I believe men appreciate having a patient supporter but require fellowship with men who have traveled the road to gain navigational insights on how to maneuver across this terrain.
Citation Format: AJ Merriweather, Dottington Fullwood, Che Ngufor, Jennifer Crook, Emelina Asto-Flores, Parisa Fathi, Roxana Dronca, Shannon Pressey, Folakemi Odedina. Early detection saves lives: I survived, and you can too— Any day above ground is a good day abstract. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 727.
Abstract
Background: Black men continue to be disproportionately affected by prostate cancer incidence and mortality as compared to their White counterparts, despite worldwide declining prostate ...cancer diagnosis rates. This complex phenomenon remains poorly understood, especially at the point of a prostate cancer diagnosis. Newly diagnosed Black men report initial feelings ranging from being “shocked,” to “receiving a death sentence,” and both an ineptness of asking questions and a reliance on physicians for treatment options due to lack of knowledge. The psychological distress from prostate cancer uncertainties affects health management and treatment decisions, though it is unclear to what extent the role of social determinants of health factor in making informed healthcare decisions.
Aim: In this scoping review, we examined the influence of the social determinants of health at point of prostate cancer diagnosis among Black men seeking to make an informed decision about their treatment plans.
Methods: We followed the methodological framework: the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Five electronic databases, Emabase, Pubmed, PsycInfo, Scopus, and Web of Science were searched for quantitative and qualitative primary studies from the period 2005 until March 2022. Two authors independently screened titles and abstracts, and full texts, against predefined criteria: empirical research, post 2000, in English-language peer-reviewed journals; participants included Black prostate cancer survivors and research explored social determinants of health at point of prostate cancer diagnosis. Studies were quality assessed for data charting.
Results: The search yielded 283 studies, with 45 included studies for synthesis. Traditional social determinants of health were frequent. However, identification of themes such as social support, masculinity and stigma, fear of abandonment by medical staff, and cost of diagnostic procedures were prominent determinants. Notably, sub-themes emerged that included coping factors such as emotional distress, perceptions of normalcy, and poor prostate cancer knowledge.
Conclusion: Understanding the social determinants of health impact on Black men, especially at point of prostate cancer diagnosis will allow survivors, physicians, and researchers to work at solving these health disparities.
Citation Format: Dottington Fullwood, AJ Merriweather, Che Ngufor, Deidre Pereira, KC Balaji, Roxana Dronca, Gerardo Colon-Otero, Jennifer Crook, Parisa Fathi, Emelina Asto-Flores, Shannon Pressey, Folakemi Odedina. iCCaRe: Social determinants of health navigation, psycho-oncology, and emotional support for Black prostate cancer survivors: Review of current practices. abstract. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 4371.
To better address prostate cancer disparities, we investigated the differences among US-born, African-born, and Caribbean-born Black men on prostate cancer risk reduction and early detection ...behaviors. Data were collected from over 3,400 Black men in five cities in Florida. One-way analysis of variance was used to explore the ethnic variations among the three study groups. We found that there were significant differences among the three groups. The US-born Black men had the highest knowledge, were most likely to have health insurance, and consume the most meat compared to African-born, and Caribbean-born Black men. African-born Black men were most likely to use chemoprevention products and discuss prostate cancer risk-reduction and early detection with a physician. Given the significant number of foreign-born Blacks in the US, it is important to disaggregate the data of US-born and foreign-born Blacks to develop effective programs and policies to address the needs of each group.
Abstract
Background: The Healthy Immigrant Effect (HIE) phenomenon proposes that: (1) when immigrants arrive in the U.S., they are healthier than their locally born counterparts; and that (2) this ...health advantage dissipates over time. While this phenomenon has been well studied and documented among Asians and Hispanics, few studies have explored the HIE among blacks. Most research studies on prostate cancer (CaP) health disparities have focused on comparing Black men to other ethnic groups within the U.S. A research area that has been overlooked and understudied is the within-group differences among black men. We investigated the ethnic variations among native-born black men, African-born black men, and Caribbean-born black men on: (1) personal history of CaP; (2) discussion of CaP risk reduction and early detection with physician; (3) screening by digital rectal examination (DRE); (4) screening by prostate specific antigen (PSA); (5) CaP knowledge; (6) diet; (7) use of chemoprevention products; and (8) physical activity.
Methods: This study was part of the Florida Prostate Cancer Disparity Project referred to as the PIPCaD project. The inclusion criteria were black men (regardless of country of origin) who were 35 years and older. Data collection took place primarily in five Florida counties. Using a previously validated survey, data were collected from over 3,400 black men. A one-way ANOVA analyses were carried out to determine if there were significant differences among the three groups on outcome variables.
Results: Of the 3,410 responses received, 3,040 indicated their ethnicity: 2,405 were native-born black men, 315 were African-born black men, and 320 were Caribbean-born black men. We found significant differences on CaP knowledge level (F{2,3016} = 13.43, p<.001), vegetable consumption (F{2,3016} = 13.43, p<.001), use of chemoprevention products (F{2,3016} = 13.43, p < .001). Post hoc tests revealed that native-born men had significantly higher CaP knowledge compared to African-born and Caribbean-born men (p<.05). Chi-square test results comparing the three groups were significant for frequencies of meat consumption (χ2{2} = 45.2845, p <.001), discussion of CaP risk-reduction and early detection with a doctor (χ2{2} = 3.81, p =.022), and insurance status (χ2{2} = 8.5071, p <.014). Relative to diet, significantly more native-born men reported meat products make up the biggest portion of their meal. Over 70% of native-born men reported eating meat at least four to six times a week compared to 64% African-born men and 62% Caribbean-born men. Although African-born men were the least insured of the three groups, more men in this group reported that they discuss CaP risk-reduction and early detection with a physician every chance they get compared to native born and Caribbean-born men. In addition, the frequency of chemoprevention use was highest among African-born men.
Discussion: Given the significant number of foreign-born blacks in the U.S., it is important to disaggregate the data of native-born and foreign-born blacks to identify knowledge gaps and develop effective programs and policies to address disparities.
Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):PR-2.
To address the need for a significant increase in cancer advocacy programs in Africa, the University of Florida (UF), the Prostate Net, and the African Organization for Research and Training in ...Cancer (AORTIC) co-hosted the first biennial International Workshop on Cancer Advocacy for African Countries (CAAC) on November 29, 2011, one-day prior to AORTIC's 8th International Cancer Conference in Cairo, Egypt. Over 70 African cancer advocates representing about 12 African countries participated in this workshop.The primary goal of the one-day workshop was to inform, educate and empower African cancer advocates to increase the promotion of their cancer programs. The first half of the workshop consisted of five formal PowerPoint presentations focused on the following topics: (a) Understanding Your Community and Assessing your Community Health Assets and Needs; (b) Developing a successful advocacy model for your cancer program; (c) Developing a Relationship with your Elected Officials to Advocate Cancer-related Policies; (d) Engaging the Media and promoting your cancer program; and (e) Developing advocacy plans for sustainability. In this article we summarize the informational content given in the PowerPoint presentation entitled "Engaging the Media and promoting your cancer program". The content given in this article is useful as a how-to guide for both the beginner and the experienced cancer advocate who wants to establish/promote a cancer awareness program.
Since behavioral factors are significant determinants of population health, addressing prostate cancer (CaP)-related health beliefs and cultural beliefs are key weapons to fight this deadly disease. ...This study investigated the health beliefs and cultural beliefs of black men relative to CaP, and the key socio-demographic correlates of these beliefs.
The study design was a cross-sectional survey of 2,864 Florida black men, age 40 to 70, on their perceived susceptibility, perceived severity, attitude, outcomes beliefs, perceived behavioral control, CaP fatalism, religiosity, temporal orientation, and acculturation relative to CaP screening and prevention.
The men reported favorable attitude and positive outcome beliefs, but moderate perceived behavioral control, CaP susceptibility and CaP severity. They also had low level of acculturation, did not hold fatalistic beliefs about CaP, had high religious coping skills and had high future time perspective. Several demographic variables were found to be associated with health beliefs and cultural beliefs.
Our study provides rich data with regard to the health and cultural beliefs that might serve to inform the development of CaP control initiative for US-born and foreign-born black men.
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