Factors and Psychosocial Barriers affecting Engagement of African American Men in Prostate Cancer Care and Prevention and Strategies for Intervention

 

Chinedum Muo

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Abstract

Prostate cancer, the second-leading cause of cancer-related deaths in U.S. men, is evidenced most in African American men at alarming rates. Despite the past decade witnessing a decrease in both incidence and mortality rates, and an increase in five-year survival rates for African American men afflicted with prostate cancer, it continues to disproportionately affect this population when compared to other ethnic groups. Several factors may contribute to the disparity. A systematic examination of the literature was performed to evaluate and understand how factors, attitudes and behaviors concerning prostate cancer-related healthcare influence the engagement of African American men in preventive care and/or treatment options. Access to health screenings for earlier detection, health literacy in prostate cancer, and deprived patient-provider communication proved to be obstacles to engagement. Community education, interventions involving community leaders, family members, and prostate cancer survivors, as well as open, informed decision making between providers and their patients should be considered in the attempt to alleviate this disparity.

 

Introduction

Prostate cancer, the most commonly diagnosed form of cancer among men in the U.S.1, is a result of the abnormal and uncontrolled growth of cells in the prostate gland, the walnut-sized male reproductive gland responsible for the production of prostatic fluid.  Major risk factors for prostate cancer include age, race, and family history. Prostate cancer presents at an earlier age in African American men among all ethnic groups, putting them at higher risk for the disease in addition to experiencing a greater likelihood of metastasis at the time of diagnosis.1,5 When controlling for such factors as socioeconomic status, African American men have been found to still be at a greater risk of developing the disease than any other ethnic group in the U.S.6 Shared factors for increased risk of prostate cancer among all men include older age, with 75% of prostate cancers being associated with men age 60 and over7, and a family history of prostate cancer with an emphasis on immediate first-degree relatives including fathers and brothers that have been diagnosed with the disease.7

Other probable risk factors for prostate cancer include diet and physical activity. Diets high in red meat or high-fat dairy products may increase prostate cancer risk8. Studies reveal that African American men consume more red meat and fast food on average than White men.9 Physical activity may help to decrease risk of prostate cancer by 10-30%10. Additionally, inactive men are shown to have higher rates of prostate cancer diagnosis compared to physically active men.

            In 2016, the American Cancer Society (ACS) estimated 180,890 new cases of prostate cancer emerging in the U.S.1 Of that number, an estimated 26,190 men would die from prostate cancer, making it the second-leading cancer-related cause of death among men after lung cancer, the leading cause of cancer deaths in both men and women. The risk of prostate cancer for African American men is 70% higher than in non-Hispanic White men in the U.S.1 In 2013, 35,430 African American men were expected to be diagnosed with prostate cancer alone, making them 1.6 times more likely to be diagnosed with prostate cancer and 2.4 times more likely to die from it than White men.4,5

Despite the past decade in which both incidence and mortality rates have gone down and five-year survival rates have gone up for African American men afflicted with prostate cancer, it continues to disproportionately affect African American men when compared to other ethnic groups in the U.S. The figures are alarming and the underlying reason behind the disparity is unclear, but several factors may contribute to the disproportionate burden faced for African Americans.

The disparity among men raises many questions regarding knowledge and treatment of prostate cancer among African Americans. Are African American men aware that they are at high risk for prostate cancer? Are there preexisting psychosocial barriers that prevent them from seeking care from healthcare professionals? Are healthcare professionals actively discussing prostate cancer screening and treatment options with their African American male patients?

This systematic review of the literature will attempt to explore multiple factors disproportionately affecting African American men in prostate cancer care and prevention efforts. The goals of this study are to examine the attitudes and behaviors concerning prostate cancer-related medical care specifically pertaining to: (1) Prostate cancer screening behaviors in African American men, (2) Awareness and understanding of prostate cancer as a disease, its fatalism, and its familiarity among these communities, and (3) Participation of African American men in informed decision-making of prostate cancer treatment options with healthcare providers. Furthermore, this review also (4) Identifies successful intervention strategies that seek to alleviate this disparity and in doing so, (5) Develops further recommendations for prostate cancer care among African American men that are in line with their overall healthcare goals and quality of life.

 

Methods

Search Strategies

A literature search was performed using the following electronic databases: PubMed and PsychInfo. In searching the PubMed database, the Medical Subject Headings (MeSH) search tool was utilized while an advanced search was performed in the PsychInfo database to obtain a more precise array of articles that pertained to the topic of interest. The databases were searched using combinations of the following keywords: prostate cancer, prostatic neoplasms, African American, Black, self-care, prevention and control, epidemiology, diagnosis, health disparities, cultural beliefs, patient perceptions, treatment options, attitudes, interventions, engagement, cultural competency, socio-economic status, and shared decision-making. The minimum criteria for selected articles included having the presence of the 2 main keywords: (1) prostate cancer and (2) African Americans, and being a peer-reviewed study published from the year 1994 through August 2015. Both qualitative and quantitative studies were considered in this review.

 

Refined Search and Critical Appraisal

In obtaining the final studies used, a three-step process was undertaken. The first step of the study criteria, the minimum study criteria - as described previously - involved articles that featured any combination of keywords, including the presence of the two main keywords defined above. The minimum criteria search garnered 1,010 results: 810 from PubMed and 200 from PsychInfo online databases. A more refined assessment of the search results was undertaken in the second step of the study criterion that focused on examining the abstracts of all available studies and their relevance to factors in prostate cancer care among African Americans in relation to (1) perceptions and obstacles in prostate cancer prevention activities and methods, (2) healthcare provider communication and patient decision making, and/or (3) cancer intervention strategies in these communities. Studies that included African American men that were asymptomatic, previously diagnosed, or survivors of prostate cancer were equally considered in the study criteria. 92 studies remained after assessment of articles for Step 2 criterion.

The last step of the inclusion criteria involved a critical appraisal of the full text articles using the appraisal method developed by Young and Solomon12 utilizing ten key questions to identify the most relevant, high-quality studies remaining. Seventeen studies met all inclusion criteria including eight studies that examined African American men’s obstacles and perceptions of prostate cancer prevention activities, four studies that explored patient-provider communication with its relation to African American men’s prostate cancer decisions, and five studies that discussed prostate cancer interventions and their effects within African American communities.

 

 

 

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Results

African American men, overall, display an underutilization of prostate cancer prevention and care. Prominent themes regarding prostate cancer-related health behaviors of African American men have been correlated to socioeconomic status, prostate cancer health literacy, widely-held cultural beliefs of the healthcare system, individual health maintenance practices, and prostate cancer screening fears and misperceptions.

 

Prostate Cancer Attitudes, Beliefs, and Healthcare Access

Socioeconomic Status (SES) and Access to Care

Studies reveal many African American men do not have adequate access to healthcare services. This statement has been correlated in part to lack of insurance and financial resources to pay for costs of screening and treatment, which can include surgeries and biopsies to assess, treat, and/or determine the presence of cancer.13-17 For instance, according to Ukoli, Patel, Hargreaves et al. in 2013, 41% of participants (n=539) in a tailored prostate cancer intervention study cited a lack of insurance as a preliminary barrier to screening for the disease.32 A demanding work schedule and extensive work days for employed men have also been cited as another possible barrier for African American men, making obtaining care difficult for some men.13,15,16 In previous studies, African American men have been found to be less willing to participate in clinical trials when they were of lower socioeconomic background.18 African American men diagnosed with more advanced stages of prostate cancer tend to be younger, less educated, and poorer.19,20 Poorer African American men are less likely to have undergone prostate cancer screening tests including with the use of prostate-specific antigen (PSA) testing earlier in their lives.19,20

 

Prostate Cancer Knowledge/Health Literacy and Awareness

Misperceptions and limited knowledge of prostate cancer, including information on screening, risk factors, and general prostate anatomy are reported to exist among African American men.14,17,21,22 In a study performed on healthy African American men (n=14) to assess their perceptions regarding prostate cancer screening, most men were unaware that African Americans were at increased risk for the disease. Other misperceptions, including lack of knowledge about the purpose and function of the prostate, or the role of PSA and DRE screening tests were found as well.13 A study conducted by Jones, Steeves, and Williams echoes this finding, citing several men in the study were not aware that African American men were at high risk nor that they could die from prostate cancer.22 Awareness of personal susceptibility to prostate cancer was affected by lack of knowledge surrounding the disease.22

African American men express difficulty in obtaining culturally relevant prostate cancer informational resources and materials within their communities and from healthcare professionals.13, 23 78% of participants (n=25) in a study examining health literacy of prostate cancer in African American men stated that they depend on physicians and healthcare providers as their primary source of cancer information.21 African American men (n=104) who had an annual physical exam in a study conducted by Forrester-Anderson cited disappointment in their primary care providers for failing to discuss screening for prostate cancer during their physical exam. The men that underwent prostate cancer screening reported not receiving much information at all about the tests. 23

 

Cultural Beliefs about Cancer and Health Maintenance

Culturally influenced health practices of African American men and their intergenerational implications contribute to limited engagement in prostate cancer-related care. Willingness to seek care is a major factor that dictates many health decisions among African American men.14,21,22) In a study conducted by Allen, Kennedy, Wilson-Glover, et al, African American men (n=14) described the deeply rooted culture of not visiting health professionals or seeking regular medical check-ups until a health issue becomes of dire concern to them.13 African American men have been generationally conditioned to uphold a sense of strength and perseverance when dealing with illness or hardship, placing work and family issues first and personal health issues as a secondary concern to them.13, 14, 17, 23 This idea of “enduring through pain” is passed down from previous generations and is increasingly becoming a considerable barrier to meeting healthcare needs for this population.

African American men perceive an unequal level of care provided to them by healthcare providers and express widespread distrust of healthcare establishments.13, 14, 17, 23 This perception stems from historical maltreatment of African Americans dating back to American slavery.African American bodies were used for experimentation purposes within the healthcare system and more notably, during the Tuskegee Syphilis Study. These instances continue to have lingering effects on patterns of care for African Americans.13

Fear of the diagnosis of cancer is also an issue raised by this population. The indication of cancer has been associated with a sense of fear, fatalism and hopelessness in these communities.14-16,23 Cancer is many times expressed as a taboo word and a rarely discussed issue among individuals within the community.13,14,17,21,23 For instance, African American men in Forrester-Anderson’s study expressed a “fear in going to the doctor and knowing the truth. 23” With cancer being perceived as a “death sentence” to many, there is considerable reluctance by African American men to receive services to address prostate cancer prevention and treatment.

 

Attitudes Regarding Prostate Cancer Screening

Screening Overview

Two of the most commonly used methods in screening for prostate cancer include: measuring for prostate-specific antigen (PSA) levels in blood and the physical examination of the curvature of the prostate gland by performing a digital rectal examination (DRE). Prostate cancer screening remains a highly controversial issue in medical institutions.5  Starting in 1994, the FDA approved the use of Prostate-Specific Antigen (PSA) with Digital Rectal Examination (DRE) to test asymptomatic men for prostate cancer; although in 2012, the U.S. Preventive Services Task Force (USPSTF) recommended against prostate-specific antigen (PSA)-based screening for prostate cancer (giving it a “D” grade) and citing the possibility of over-diagnosis of prostate tumors using just the PSA test alone.11 In the early detection of prostate cancer, medical institutions remain irresolute of whether the potential benefits of screening outweigh the harms and possible side-effects that may be associated with treatments and radiation therapies. The American Cancer Society (ACS) recommends screening to start at age 50 for men at average risk and age 45 for men at high risk, which include African American men and men with first-degree relatives previously diagnosed with prostate cancer.1 Conversely, organizations including the American Urological Association (AUA) and the USPSTF do not recommend routine screening using PSA in men of average disease risk to support the benefits outweighing the harms due to lack of evidence in clinical trials, frequent false-positive results, and unnecessary biopsies and complications (however, it is notable to mention that African American men were poorly represented in these trials carried out and recommendations may not be applicable regarding this population).24 In the decision to screen African American men of ages 40+, both organizations are in agreement that screening should be assessed on a case by case basis. All institutions, however, recommend all patients undergo shared decision-making with health care providers regarding screening on an individual basis.1,24

 

African American Men’s Attitudes Regarding Screening

African Americans are less likely to report routine physicals and subsequently less likely to report prostate cancer screening tests.25 In a study examining screening among African American men in a focus group format, out of 104 participants age 40-80, only 42% had undergone screening for prostate cancer.23 In many instances, some African American men elect not to undergo prostate cancer screening due to the embarrassment and shame they associate with a possible diagnosis of prostate cancer.14,15 However, social and familial support can play a major role in initiating screening activities for African American men.14 The importance of familial and spousal support reveals the importance of women in African American men’s lives that encourage them to seek health services and facilitate contact with healthcare providers.21,22 Within a study aimed at exploring perceptions of prostate cancer among African American men (n=25), participants mentioned their wives as an important source of health advice and cancer information, with family members being the 2nd most preferred interpersonal source of cancer information (13%) preceded by physicians.21 Religious influences including encouragement of health promotion and cancer prevention activities by church officials proved to be beneficial for men, particularly on the importance of screening and in helping them to make mindful decisions concerning their health.14,15 In a study conducted by Patel, Kenerson, Wang, et al., to assess sociodemographic factors that affect screening practices, positive predictors of screening for African American men included being married, being older, having health insurance, having a higher income, and having increased contact with health care systems.16

Viewing screening negatively, specifically the digital rectal examination (DRE) as an invasion of a man’s privacy, is a widely held belief across men in this population.14,17,21 For many African American men in a study conducted by Allen, Kennedy, Wilson-Glover, et al., the prostate exam was seen as a “violation of manhood” representing a threat to one’s masculinity.13 Participants noted that African American men are particularly “hypersensitive” to perceived threats to their maleness.13 Concerns were also expressed about the loss of sexual function or impotence as a result of treatment.14,17

 

 

Table 1. Major themes concerning attitudes, beliefs, and healthcare access of African American men in regards to prostate cancer

 

 

 

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Healthcare Provider Communication and Patient Engagement in Decision Making

Quality of Patient-Provider Relationships

Poor patient-provider relationships prove harmful for African Americans and their endeavors to seek medical care. A lack of responsiveness by providers produces a long-lasting negative impact on the willingness of African American men to engage in prostate cancer care.13   From self-reported accounts of African American men (n=37) and their interactions with primary care providers, a majority expressed their discontent regarding providers’ assumptions of their literacy and education level solely due to their race and expressed their desire for doctors to treat them as equals during medical office encounters.13 According to a study conducted by Moore, Hamilton, Knafl, et al., African American male patients experience greater satisfaction in prostate cancer care when providers perceive them to be better communicators, establishing a reciprocal relationship between provider and patient.26 

Patient-provider communication styles can dictate how active or passive African American patients are in their health decisions. In a study assessing patient satisfaction among African American men and their providers, men responded positively to interpersonal treatment by providers including the time and patience the provider used addressing the patient’s questions and concerns, as well as their friendliness, warmth, and respect shown toward the patient.26

Influence of providers on the health decisions of African American men as they relate to prostate cancer is an essential factor in their engagement in prevention activities.22 In a study performed by Blocker, Smith Romocki, Thomas, et al., participants (n=29) reported that they were influenced to undergo prostate cancer screening if the physician recommended the procedure.14 As the most preferred interpersonal source for cancer communication, open communication and encouragement from health care providers serve to motivate African American patients to adhere to cancer treatments and provide a support system throughout the duration of treatments and medical visits.27

 

Informed and Shared Decision-Making Regarding Prostate Cancer

Informed decision-making involves men understanding their individual risk of prostate cancer, other potential risks that the disease carries, and the benefits and limitations of screening and treatment options.13 In a study assessing treatment decision-making and quality of life for African American male patients diagnosed with and/or treated for prostate cancer, African American men preferred to take an active or collaborative role in making the final decisions on treatment options when they were well-informed about prostate cancer and each treatment option’s benefits and limitations.28 Similarly, within a survey weighing shared-decision making preferences among African American men (n=286), 57% of the sample preferred shared-decision making, 36% preferred to make their own decision, and 7% wanted their doctor to be the sole decider on screening and treatment.29 When health care providers supply limited information on screening and treatment options concerning prostate cancer, African American male patients feel pressured to make decisions and often exhibit passive decision making preferences in which physicians assert control over their treatment decisions.27,29 Health care providers that are able to communicate to African American patients in a language they can understand with the use of simplified words to discuss complex medical terminology are able to help patients to better understand cancer information and treatment. This leads to further patient engagement  and informed decision-making with their providers.27

 

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 Prostate Cancer Intervention

Many African American men maintain that outreach on prostate cancer is inadequate and the scarcity of African American providers and community-based health services discourage men from seeking prostate cancer care.17 However, there has been progress made in the development of interventions geared toward targeting men in this population. In an intervention assessing the impact of informed decision-making with regards to prostate cancer screening in African American men, an enhanced intervention group  utilized a prostate cancer informational booklet in addition to an in-person decision education session to assess each participant’s major decision factors influencing their decision to undertake screening. A two-fold increase in screening utilization was observed in a six month period after decision education.30 Prostate cancer education interventions help to improve decisional conflicts and knowledge of the disease, further helping African American men to participate effectively in informed decision making.31

Current studies describe the importance of developing culturally-specific and community-led educational materials and interventions for African American men. When examining the effects of an educational intervention aimed at improving prostate cancer knowledge, screening rates, and information, a study conducted by Patel, Ukoli, Liu, et al. utilized a community advisory board (CAB), several lay community educators, and developed an educational brochure in collaboration with the target community to carry out the study. Results showed 56% of participating African American men (n=104) received a PSA test 3-months following the intervention.31 In an intervention targeted at low-income African American men,  members of the community served as community navigators who administered a 15-minute education session with the incentive of costs covered for screening and biopsies. Men displayed improvement in prostate cancer knowledge, understanding, and an overall 3-fold increase in screening with affordability serving as an integral motivator in screening behavior.32 When participating in free prostate cancer screening as part of an intervention carried out in community settings, such as prostate cancer education performed at an African American church, African American men are more responsive, engaged, and more willing to undergo screening.33

The use of survivors to communicate complex issues concerning prostate cancer to African American community members has been shown to be effective in promoting the benefits of early prevention activities and improving decision making.17,34 Vijaykumar, Wray, Jupka, et al. cites the ability of survivors to normalize the cancer experience. When examining the efficacy of survivor-led interventions that focused on African American prostate cancer survivors sharing insights from their experiences, survivors connected on a personal level with participants, and the decision self-efficacy of the intervention group increased.34

 

 

 

 

 

 

 

 

 

 

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Discussion

The seventeen studies that comprise this review encompass a wide-array of men from different socioeconomic backgrounds, education levels, and health statuses that can be generalizable to a wider population of African American men. In efforts to reduce disparity in prostate cancer among African American men, increasing health literacy and awareness of the disease is essential. From the literature, African American men self-reported being given little to no information concerning preventive health measures13 which outline the importance of finding ways to increase health literacy of prostate cancer and to advocate for routine health check-ups in the community. Transfer of health information across generations among older and younger African American men is crucial15,17 to maintain a consistent discussion regarding the importance of routine health check-ups and to facilitate a greater awareness of health issues that affect the African American population.  

Understanding the factors and perceptions concerning prostate cancer among African American men is an essential consideration when developing interventions that target communities. Interventions are extremely valuable and necessary for high risk populations such as African American men that promote informed decision-making concerning prostate cancer screening and shared decision-making with patients and their providers.30 In a study examining prostate cancer survivors’ perceptions towards screening, survivors were passionate concerning the need to spread the word about the importance of screening with the endorsement of wide-scale screening programs in their communities.13

 

Strategies and Recommendations for Future Prostate Cancer Communication and Intervention

To aid in the development of prostate cancer interventions that sufficiently target African American men, the following recommendations may be considered: 

1. Implementation of Prostate Cancer and Overall Health Promotion Activities and Interventions that are Firmly Based in the Community.

            Effort should be evenly placed in implementing prostate cancer and men’s health interventions for younger African American men (as it is placed onto older African American men) in order to combat generational misperceptions of prostate cancer. Health education sessions should be considered for African American men starting at age 35 to facilitate improvement in health literacy and to address the relatively early diagnoses for these men.

            Community-led prostate cancer programs in collaboration with local health centers and hospitals should be considered in attempts to establish trust and develop methods of communication with African American communities and medical establishments. This approach will serve to empower the community by educating and informing African American community leaders who in turn will educate other members of the community. African American prostate cancer survivors as educators may be useful in programs to provide and share their experiences, providing other African American men with a means to identify with and become more engaged in prostate cancer intervention efforts.

 

2. Involvement and Correspondence from Family Members (i.e. spouses, etc.) and Community Members in Prostate Cancer Health Decisions.

            In delivering cancer information concerning screening decisions and/or treatment options, physicians and other medical providers should attempt to involve family members of African American men, including spouses, to increase transparency in medical decisions and establish a network of support for African American male patients coping with prostate cancer. African American communities place an importance on the relations of their family and community members and medical establishments can gain a commensurate amount of engagement from their African American patients by reaching out to these members and sources within the community.

 

3. Importance of Trust and Open Communication among Interactions with African American Male Patients and Their Providers.

            Healthcare providers must understand the foundations from which mistrust of medical establishments stems  for their African American patients. African American male patients may feel alienated and apprehensive when seeking care from providers due to deeply rooted instances of racism, maltreatment, and cultural beliefs of medical practices. Providers must also focus on each patient’s personal risk to cancer. For instance, in addition to medical institution recommendations, providers could share information with patients on personal risk relating to their age, race, and family history of developing the disease.15 Providers must attempt to create an atmosphere in which African American male patients feel acknowledged, respected and validated.  Patients’ opinions and cultural practices must be recognized when considering treatment options as well as during the process of understanding medical information, thus helping to establish a sense of trust between patients and providers.

 

Implications

An intersectional approach toward prostate cancer-related healthcare is imperative to address incidence and mortality rates in African American populations. This approach would utilize an understanding of individual, socio-cultural, and institutional factors that affect and shape the attitudes, perceptions, and behaviors of African American men toward care and treatment.13 Collaboration between medical institutions and African American community centers and leaders, as well as the involvement of family members of African American men, is imperative to establish trust within the community for prostate center prevention and treatment. A collective endeavor will ensure longevity and maintenance of good health practices and improvement of health literacy among this population.

 

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