Life after prostate cancer: A systematic literature review and thematic synthesis of the post‐treatment experiences of Black African and Black Caribbean men

Evidence shows that there are significant ethnic variations in prostate cancer prevalence and outcomes. Specifically, Black African and Black Caribbean men may encounter different post‐treatment experiences than Caucasian men due to their disproportionately higher risk of being diagnosed with advanced prostate cancer. But to date, no review of these experiences has been undertaken. This review synthesised findings from existing literature on the post‐treatment experiences of Black African and Black Caribbean men with prostate cancer and identified pertinent issues which may be useful to inform practice and future research. Seven databases were systematically searched using developed search terms. Four qualitative studies were identified and critically appraised. Findings are summarised under four main themes: symptom experience, healthcare experience, marital and social relationships and coping strategies. Cultural definitions of masculinity influenced the meanings men gave to their post‐treatment experiences. While men's experiences of healthcare varied, the provision of professional support to address their post‐treatment distress was lacking. Men derived most support from wives, peers and church communities. A culturally sensitive approach which recognises diversity among Black African and Black Caribbean populations and treats individuals within their religious and socio‐cultural contexts could potentially improve men's post‐treatment experiences. Areas for further research were also identified.     

Recruiting Black/African American men for research on prostate cancer prevention

BACKGROUND: Black/African American men die of prostate cancer at a greater rate relative to other males. During the period from 1992 to 1998, prostate cancer incidence rates in the United States were 234.2 per 100,000 persons among non-Hispanic black males and 144.6 per 100,000 persons among white males. The reasons for these increased rates of prostate cancer among black males are largely unknown, but increased mortality is associated with late detection. The authors conducted a longitudinal study of black men that investigated prostate cancer prevention behaviors within this population. The purpose of the current article is to identify successful recruitment strategies that were reported by participants in this study of prevention behaviors. METHODS: Qualitative research methods were used to elucidate men's thoughts, attitudes, beliefs, and practices regarding prostate cancer prevention behaviors and to identify strategies for attracting black men to research programs and retaining them in these programs. RESULTS: Ethnocentric recruitment strategies that were identified included the development of tailored printed materials; the use of targeted locations; and a personalized, participatory approach for engaging potential participants. We contacted 498 black men and enrolled a cohort of 277 non-Hispanic black males (75% of whom were recruited within a 9-week period) in the current study. CONCLUSIONS: Unlike other studies that reported difficulty in recruiting African American men, the current study did not encounter such difficulties. The authors attribute their success to culturally attractive Afrocentric materials; cultural sensitivity; a caring, professional, personalized ethnic approach; respect; and participatory involvement of the target population. Nonetheless, the authors did encounter barriers, such as lack of physician interest and lack of trust in quality medical care. These barriers must be overcome before black males can be engaged and retained in research studies on prostate cancer prevention.     

Breast cancer and age in Black and White women in South East England

Black women have lower age-standardized breast cancer incidence rates than White women in the United Kingdom. However, little is known about such differences in risk in separate age groups. Records on female residents of South East England diagnosed with breast cancer between 1998 and 2003 were extracted from the Thames Cancer Registry database. Age-specific incidence rates were calculated for each 5-year age group using 2001 Census population data for White, Black Caribbean and Black African women. Black Caribbean and Black African breast cancer patients were younger than both the White patients and those with no ethnicity recorded. Black Caribbean and Black African women in the population also had a younger age profile than White women. The computed age-specific incidence rates in women aged under 50 were similar in the different ethnic groups, whereas in women aged 50 and over White women had higher rates. The younger age of Black Caribbean and Black African breast cancer patients in South East England reflects the younger age of these populations, rather than an increased risk of disease at younger ages.     

Cancer statistics for African American/Black People 2022

African American/Black individuals have a disproportionate cancer burden, including the highest mortality and the lowest survival of any racial/ethnic group for most cancers. Every 3 years, the American Cancer Society estimates the number of new cancer cases and deaths for Black people in the United States and compiles the most recent data on cancer incidence (herein through 2018), mortality (through 2019), survival, screening, and risk factors using population-based data from the National Cancer Institute and the Centers for Disease Control and Prevention. In 2022, there will be approximately 224,080 new cancer cases and 73,680 cancer deaths among Black people in the United States. During the most recent 5-year period, Black men had a 6% higher incidence rate but 19% higher mortality than White men overall, including an approximately 2-fold higher risk of death from myeloma, stomach cancer, and prostate cancer. The overall cancer mortality disparity is narrowing between Black and White men because of a steeper drop in Black men for lung and prostate cancers. However, the decline in prostate cancer mortality in Black men slowed from 5% annually during 2010 through 2014 to 1.3% during 2015 through 2019, likely reflecting the 5% annual increase in advanced-stage diagnoses since 2012. Black women have an 8% lower incidence rate than White women but a 12% higher mortality; further, mortality rates are 2-fold higher for endometrial cancer and 41% higher for breast cancer despite similar or lower incidence rates. The wide breast cancer disparity reflects both later stage diagnosis (57% localized stage vs 67% in White women) and lower 5-year survival overall (82% vs 92%, respectively) and for every stage of disease (eg, 20% vs 30%, respectively, for distant stage). Breast cancer surpassed lung cancer as the leading cause of cancer death among Black women in 2019. Targeted interventions are needed to reduce stark cancer inequalities in the Black community.     

Development of a Theory-based,Sociocultural Instrument to Assess Black Maternal Intentions to Vaccinate Their Daughters Aged 9 to 12 Against HPV

The human papillomavirus (HPV) vaccine could assist in reducing the cervical cancer disparity existing between Black and White women. Understanding factors influencing Black maternal intentions to vaccinate their daughter is essential in improving vaccination uptake. However, existing instruments do not comprehensively assess factors (e.g., culture) influencing maternal intentions. This paper describes the development of the Human Papillomavirus Vaccination Survey for Black Mothers with Girls Aged 9 to 12 (HPVS-BM), the first instrument to measure knowledge, attitudes, subjective norms, and cultural beliefs relating to Black maternal intentions to vaccinate their daughters aged 9 to 12 years against HPV. The items and scales were refined using content review by experts, as well as cognitive interviews and pilot testing with target audience participants. The final version of the HPVS-BM was administered to 242 Black mothers with adolescent daughters. Internal reliability was determined using Cronbach’s alpha. An a priori hypothetical model was developed to determine convergent and discriminant validity. All scales of the HPVS-BM had an acceptable internal reliability of 0.70 or higher. The intention scale of HPVS-BM was significantly correlated (p?<?.05) with perceived benefits, perceived barriers, and subjective norms, supporting strong convergent validity. Moderate discriminant construct validity was also demonstrated. Exhibiting good psychometrics, this instrument could be used by healthcare researchers and professionals to develop programs to increase HPV vaccination among Black adolescent females aimed at reducing the racial disparities in cervical cancer. Further psychometric testing of this survey tool for understanding factors influencing maternal intentions is warranted.     

Endometrial cancer risk and trends among distinct African descent populations

Background

Endometrial cancer (EC) is the fourth most common cancer among Black women in the United States, a population disproportionately affected by aggressive nonendometrioid subtypes (e.g., serous, carcinosarcoma). To examine EC vulnerability among a wider spectrum of African descent populations, a comparison between Black women residing in different countries, rather than in the United States alone, is needed.

Methods

The authors analyzed 34,789 EC cases from Florida (FL) (2005–2018), Martinique (2005–2018), and Guadeloupe (2008–2018) based on cancer registry data. Age-adjusted incidence rates, incidence rate ratios (IRRs), and annual percent changes (APC) in trends were estimated for Black populations residing in the United States (non-Hispanic Blacks [NHB]) and Caribbean. The US non-Hispanic White (NHW) population was used as a reference.

Results

Caribbean Black women had the lowest rates for endometrioid and nonendometrioid subtypes. Nonendometrioid types were most common among US (FL) NHBs (9.2 per 100,000), 2.6 times greater than NHWs (IRR, 2.60; 95% confidence interval [CI], 2.44–2.76). For endometrioid EC, rates increased 1.8% (95% CI, 0.1–3.5) yearly from 2005 to 2018 for US (FL) NHBs and 1.2% (95% CI, 0.9–1.6) for US (FL) NHWs whereas no change was observed for Caribbean Blacks. For nonendometroid carcinomas, rates increased 5.6% (95% CI, 4.0–7.2) among US (FL) NHB, 4.4% (95% CI, 0.3–8.6) for Caribbean Black, and 3.9% for US (FL) NHW women (95% CI, 2.4–5.5).

Conclusions

Lower rates of nonendometrioid EC among Caribbean Black women suggest that vulnerability for these aggressive tumor subtypes may not currently be an overarching African ancestry disparity. Most importantly, there is an alarmingly increasing trend in nonendometrioid across all populations studied, which warrants further surveillance and etiological research for this particular subtype.

Plain Language Summary

• We analyze population-based incidence rates and trends of endometrial cancer (EC) for African descent populations residing in different countries (i.e., United States, Martinique, Guadeloupe) to examine whether EC vulnerability among Black women is socio-environmental or more ancestry-specific in nature.
• The increased EC risk was not uniform across all Black women since the Caribbean had the lowest rates (for endometrioid and nonendometrioid histology subtypes).
• Regardless, from 2005 to 2018, there was an increasing trajectory of nonendometrioid EC for all groups, regardless of race.

     

The influence of acculturation and breast cancer‐specific distress on perceived barriers to genetic testing for breast cancer among women of African descent

Objective: Rising health disparities are increasingly evident in relation to use of genetic services (including genetic counseling and testing) for breast cancer risk, with women of African descent less likely to use genetic services compared with Whites. Meanwhile, little is known regarding potential within‐group acculturation and psychological differences underlying perceived barriers to genetic testing among women of African descent. Methods: Hypothesized contributions of acculturation factors and breast cancer‐specific distress to perceived barriers to genetic testing were examined with a statistical analysis of baseline data from 146 women of African descent (56% US born and 44% foreign born) meeting genetic breast cancer risk criteria and participating in a larger longitudinal study that included the opportunity for free genetic counseling and testing. Perceived barriers assessed included: (1) anticipation of negative emotional reactions, (2) stigma, (3) confidentiality concerns, (4) family‐related worry, and (5) family‐related guilt associated with genetic testing. Results: In multivariate analyses, being foreign born was a significant predictor of anticipated negative emotional reactions about genetic testing (β=0.26; SE=0.11; p=0.01). Breast cancer‐specific distress scores (avoidance symptoms) were positively related to anticipated negative emotional reactions (β=0.02; SE=0.005; p=<0.0001), confidentiality concerns (β=0.02; SE=0.01; p=0.02), and family‐related guilt (β=0.02; SE=0.01; p=0.0009) associated with genetic testing. Conclusions: Results suggest an influence of acculturation and breast cancer‐specific distress on perceived barriers to genetic testing among women of African descent. The potential utility of culturally tailored genetic counseling services taking into account such influences and addressing emotional and psychological concerns of women considering genetic testing for breast cancer should be investigated. Copyright © 2008 John Wiley & Sons, Ltd.     

Pathways to diagnosis for Black men and White men found to have prostate cancer: the PROCESS cohort study

Black men in England have three times the age-adjusted incidence of diagnosed prostate cancer as compared with their White counterparts. This population-based retrospective cohort study is the first UK-based investigation of whether access to diagnostic services underlies the association between race and prostate cancer. Prostate cancer was ascertained using multiple sources including hospital records. Race and factors that may influence prostate cancer diagnosis were assessed by questionnaire and hospital records review. We found that Black men were diagnosed an average of 5.1 years younger as compared with White men (P<0.001). Men of both races were comparable in their knowledge of prostate cancer, in the delays reported before presentation, and in their experience of co-morbidity and symptoms. Black men were more likely to be referred for diagnostic investigation by a hospital department (P=0.013), although general practitioners referred the large majority of men. Prostate-specific antigen levels were comparable at diagnosis, although Black men had higher levels when compared with same-age White men (P<0.001). In conclusion, we found no evidence of Black men having poorer access to diagnostic services. Differences in the run-up to diagnosis are modest and seem insufficient to explain the higher rate of prostate cancer diagnosis in Black men.     

Development of decision‐support intervention for Black women with breast cancer

Background: Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision‐support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black women's adjuvant therapy decisions, use these formative data to develop messages for a treatment decision‐support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women. Methods: Thirty‐four in‐depth interviews were conducted with breast cancer patients in active treatment, survivors and cancer providers to gather qualitative data. Participant ages ranged from 38 to 69 years. A cultural framework was used to analyze the data and to inform intervention messages. Most women relied on their providers for treatment recommendations. Several women reported problems communicating with providers and felt unprepared to ask questions and discuss adjuvant treatment options. Other factors related to treatment experiences were: spiritual coping, collectivism and sharing breast cancer experiences with other Black survivors. Results: Using these formative data, we developed an intervention that is survivor‐based and includes an in‐person session which incorporates sharing personal stories, communication skills training and decision support. Intervention materials were reviewed by community members, researchers/clinicians and patients newly diagnosed with breast cancer. Conclusion: Patients reported satisfaction with the intervention and felt better prepared to talk with providers. The intervention will be tested in a randomized trial to enhance decision support and increase use of indicated adjuvant treatment. Copyright © 2009 John Wiley & Sons Ltd.     

A Mixed Method Approach to Examine Surveillance Mammography Experiences in Black and White Breast Cancer Survivors

PurposeThe use of surveillance mammography following a breast cancer (BC) diagnosis is associated with early detection of disease relapse and increased overall survival; yet Black women compared to White women have the lowest surveillance mammography rates, with limited explanation. To further understand this racial disparity the present study examines the association of mammography beliefs, knowledge, and healthcare delivery factors on receipt of surveillance mammography among Black and White breast cancer survivors.MethodsThis is a convergent parallel mixed method study design of an online survey and online focus groups among Black and White BC survivors (N = 266) recruited from community engagement. The online focus groups consisted of a series of theory-informed questions via social media platforms (eg Breastcancer.org, Quora, Reddit). An in-depth thematic analysis approach was used to extract themes from online focus group data. Bivariate (χ²) and multivariable logistic regression analyses were conducted using the survey data to examine associated factors with receipt of a surveillance mammography within 12 months (yes vs. no).Results76% (n = 177) of women were Black, 62% were <5 years since diagnosis, 98% had health insurance, with an age range from 23 to 79 (mean = 55) years. 72% of the sample received a surveillance mammogram relative to 27%. Women more frequently received a surveillance mammogram if they reported perceived mammography benefits (<.001), underwent lumpectomy (P< .001) and had health insurance (P = .04). Black women without communication about surveillance care with providers had a lower likelihood of receiving a surveillance mammogram (OR:0.09,95% CI: 0.01-0.45, P = .003). Thematic findings from online focus groups included motivators for receipt of surveillance mammograms: physician recommendation, regular physical exams, and knowledge of recommended guidelines. Barriers of non-receipt of surveillance mammograms included: transportation, medical cost/financial barriers, feeling ignored from providers, and medical mistrust.ConclusionWomen may require more individualized information regarding their surveillance care to support routine guideline concordant follow-up. Patient-provider-communication is an integral part of Black survivors’ surveillance care needs. Improving patient-provider communication for Black women's is necessary to address this group cancer care needs.     

Responding to a significant recruitment challenge within three nationwide psychoeducational trials for cancer patients

Purpose

When faced with a significant recruitment challenge for three nationwide psychoeducational trials targeting prostate and breast cancer patients, the Cancer Information Service Research Consortium initiated outreach efforts to increase accrual. Recruitment is reported by major outreach strategy to inform the use of similar campaigns, either as primary recruitment efforts or to supplement “in-reach” recruitment within oncology settings.

Methods

During a 33-month period, recruitment was tracked from the National Cancer Institute’s Cancer Information Service (CIS), the American Cancer Society (ACS), Dr. Susan Love Research Foundation’s Love/Avon Army of Women (AOW), Internet advertising, press releases, radio/television interviews, recruitment materials in community venues, and outreach to churches and cancer support organizations.

Results

Across projects, the majority (89 %) of recruited participants (N?=?2,134) was obtained from the CIS (n?=?901, 19 months of recruitment), AOW (n?=?869, 18 months), and ACS (n?=?123, 12 months). Other efforts showed minimal gain in recruitment.

Conclusions

Cancer information programs (e.g., CIS and ACS) and registries of individuals willing to participate in cancer-related research (e.g., AOW) can represent exceptional resources for outreach recruitment of cancer patients, especially when the eligibility criteria are highly restrictive. However, these resources do not yield samples representative of the larger population of adults diagnosed with cancer, and conclusions from such trials must be tempered accordingly.

Implications for cancer survivors

Inadequate recruitment to randomized controlled trials limits the creation of useful interventions for cancer survivors. By enrolling in cancer registries and taking part in research, cancer survivors can contribute to the development of effective resources for the survivor population.     

Distress,anxiety, depression,and emotional well‐being in African‐American men with prostate cancer

Objective: African‐American men have an incidence rate of prostate cancer 60% higher than Caucasian men. Over one‐quarter of men with prostate cancer experience significant distress, yet psychosocial research has rarely focused on African‐American men. This study presents novel data on emotional well‐being, distress, anxiety, and depression in African‐American men with prostate cancer. Methods: This archival research combined two databases (N=385 and N=367) comprised of 55 African‐American men with prostate cancer. Quality of life was assessed with the Functional Assessment of Cancer Therapy, distress was measured with the Distress Thermometer, and anxiety and depression were measured with the Hospital Anxiety and Depression Scale. African‐American and Caucasian men were matched on age, education, and stage of disease, and compared on emotional well‐being, distress, anxiety, and depression. Results: The mean age of the 55 African‐American was 63 years old. In non‐matched comparison, African‐American men had elevated levels of distress, anxiety, and depression similar to Caucasian men. African‐American men reported high levels of clinically significant distress (>31%) and anxiety (>23%). However, after matching the African‐American and Caucasian men, African‐American men reported higher mean scores on emotional well‐being (p<0.05) and a lower percentage of African‐American men displayed clinically significant depressive symptoms (p<0.05) compared with Caucasian men. Conclusions: After matching the sample, African‐American men seem to display a sense of resilience, demonstrating greater emotional well‐being and a lower incidence of clinically significant depressive symptoms, compared with Caucasian men. This is consistent with cross‐cultural research outside of prostate cancer. Continued research is needed to further elucidate the concept of resiliency in African‐American men with prostate cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

'The greatest thing in the world is the family': the meaning of social support among black Caribbean and white British patients living with advanced cancer

Purpose: Little is known about the perceptions and meanings of social support among black and minority ethnic groups living with advanced cancer in the UK. The aim of this study was to explore social support networks and their meaning among Black Caribbean and White British patients living with advanced cancer. Method: Semi‐structured interviews were conducted with 26 Black Caribbean and 19 White British cancer patients and analysed using the framework approach. Results: In all, 25 of 26 Black Caribbean and 18 of 19 White British participants volunteered views on the presence of social support in their lives. The presence of a spouse or partners was an indispensable feature within the social support networks in both ethnic groups. More Black Caribbean than White British participants referred to the presence of social networks made through their church communities as being a source of practical and emotional support. Conclusions: We recommend that when health and social‐care professionals perform an assessment interview with patients from cultural backgrounds different to their own, opportunities should be made for patients to express information about their social support networks. This will help them to better understand their place alongside statutory services. Spouses and partners should be given greater recognition of their contribution in order to continue with their important role. Copyright © 2011 John Wiley & Sons, Ltd.     

Barriers and Strategies to Participation in Tissue Research Among African-American Men

Before the burgeoning field of biospecimen collection can advance prevention and treatment methods, researchers must access diverse molecular data samples. However, minorities, especially African-American men, remain reticent to join these studies. This study, using theory-based approaches, investigated African-American men’s barriers to participating in biorepository research. Fourteen focus groups were conducted among 70 African-American men (ages 40 to 80). The groups were stratified by prostate cancer history and educational attainment background. Participants identified perceived factors that promoted or hindered study participation when questioned about their knowledge and attitudes about biospecimen research. Ninety-four percent of participants indicated never participating in a study that collected biological samples. Barriers to their participation included lack of knowledge and understanding regarding biospecimen research practices and uses. In addition, they extensively cited a prevalent mistrust of the medical community and discomfort with study recruitment practices. African-American males were more willing to participate in biorepository studies with physician endorsement or if they understood that participation could benefit future generations. Men also wanted more recruitment and advertising done in familiar places.     

Adherence to diet,physical activity and body weight recommendations and breast cancer incidence in the Black Women's Health Study

Adherence to cancer prevention recommendations has been associated with lower incidence of breast cancer in previous studies, but evidence in African American women is limited. This project evaluated the association between adherence to the World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) cancer prevention recommendations and breast cancer incidence among African American women. The Black Women's Health Study (analytic cohort = 49,103) is an ongoing prospective cohort study of African American women, ages 21–69 years at baseline (1995). Adherence scores for seven WCRF/AICR recommendations (adherent = 1, partial adherence = 0.5, non‐adherence = 0) were calculated using questionnaire data and summed for overall (maximum = 7) and diet only (maximum = 5) scores. Associations between baseline and time‐varying adherence scores and breast cancer incidence (N = 1,827 incident cases through 2011) were evaluated using proportional hazards regression. In this cohort, 8.5% adhered >4 recommendations. Adherence at baseline was not associated with breast cancer incidence. Higher overall time‐varying adherence (per 0.5 point increase) was associated with lower breast cancer incidence (HR: 0.90, 95% CI: 0.84–0.96). Adherence to physical activity, sugar beverage and red and processed meat recommendations were also associated with reduced risk. Adherence to the WCRF/AICR recommendations was low and may be associated with lower breast cancer incidence in African American women.     

Race, healthcare access and physician trust among prostate cancer patients

Objective

To study the effect of healthcare access and other characteristics on physician trust among black and white prostate cancer patients.

Methods

A three-timepoint follow-up telephone survey after cancer diagnosis was conducted. This study analyzed data on 474 patients and their 1,320 interviews over three time periods.

Results

Among other subpopulations, black patients who delayed seeking care had physician trust levels that were far lower than that of both Caucasians as well as that of the black patients overall. Black patients had greater variability in their levels of physician trust compared to their white counterparts.

Conclusions

Both race and access are important in explaining overall lower levels and greater variability in physician trust among black prostate cancer patients. Access barriers among black patients may spill over to the clinical encounter in the form of less physician trust, potentially contributing to racial disparities in treatment received and subsequent outcomes. Policy efforts to address the racial disparities in prostate cancer should prioritize improving healthcare access among minority groups.     

Psychosocial issues related to sexual functioning among African‐American prostate cancer survivors and their spouses

Objective: Focus on cancer survivorship and quality of life (QOL) is a growing priority. The aim of this study was to identify and describe the most salient psychosocial concerns related to sexual functioning among African‐American (AA) prostate cancer survivors and their spouses. Methods: Twelve AA prostate cancer survivors and their spouses participated in semi‐structured individual interviews. The interviews assessed couples' experiences with psychosocial adjustment and sexual functioning posttreatment for localized prostate cancer. The data were analyzed using the constant comparison method and content analysis. Results: In this qualitative study of couples surviving prostate cancer, there were divergent views between the male prostate cancer survivors and their female partners, particularly regarding sexual functioning. For the males, QOL issues emerged as the primary area of concern, whereas survival of their husbands was considered most important among the female spouses. The male respondents expressed unease with the sexual side effects of their cancer treatment, such as erectile dysfunction and decreased sexual desire and satisfaction. Female spouses recognized decreased sexual desire in their partners following treatment, but this was not considered a primary concern. Conclusions: Patients and their spouses may have differing perceptions regarding QOL and the impact of sexual functioning on survivorship. This study points to the need for further research and intervention development to address these domains with a goal to improve QOL. Copyright © 2010 John Wiley & Sons, Ltd.