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Posted: April 30th, 2022
African-American men with prostate cancer and the impact of health literacy on oncologic outcomes.
Prostate cancer (PC) is a major health concern for men in the United States, especially for African-American men who have higher incidence and mortality rates than other racial/ethnic groups. Health literacy, defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan & Parker, 2000, p. vi), may play a role in explaining these disparities. Health literacy encompasses multiple dimensions, including functional, interactive, and critical skills that enable individuals to access, comprehend, evaluate, communicate, and act on health information (Nutbeam, 2000). This paper aims to explore the impact of health literacy on oncologic outcomes for African-American men with PC, based on a review of relevant literature and a qualitative study of their understanding and perceptions about PC.
According to the literature, low health literacy is associated with lower PC knowledge, lower screening rates, lower treatment adherence, lower quality of life, and poorer survival outcomes among men with PC (Friedman et al., 2009; Miller et al., 2018; Song et al., 2012). Low health literacy may also affect the treatment choice for men with slow-growing PC, as a recent study found that men with low health literacy were seven times less likely to choose active surveillance after getting a genomic test than men in the control group (Harvard Health Publishing, 2021). Moreover, low health literacy may interact with other factors, such as socioeconomic status, cultural beliefs, stigma, mistrust, fear, and misinformation, to create barriers to PC prevention, detection, and treatment among African-American men (Vapiwala et al., 2021).
To gain a deeper insight into the health literacy needs and challenges of African-American men with PC, we conducted a qualitative study using semi-structured interviews with 25 African-American men aged 45 and older living in Nairobi. We asked them questions about their PC risk factors, screening behaviors, treatment options, and sources of information. We used modified grounded theory to analyze the transcripts and identify recurrent themes.
The main themes that emerged from the interviews were:
– Lack of awareness and knowledge about PC risk factors and screening guidelines. Many participants did not know that being African-American, having a family history of PC, or being older than 50 increased their risk of developing PC. They also did not know the benefits and limitations of PSA testing or digital rectal examination. Some participants expressed confusion or skepticism about the conflicting recommendations from different organizations or providers regarding PC screening.
– Misconceptions and myths about PC etiology and prevention. Some participants believed that PC was caused by an unhealthy lifestyle, such as smoking, drinking alcohol, eating junk food, or having multiple sexual partners. They also believed that PC could be prevented by eating certain foods or herbs, such as garlic, ginger, or moringa. Some participants attributed PC to divine will or fate and did not see the need for screening or treatment.
– Stigma and fear associated with PC diagnosis and treatment. Some participants perceived PC as a shameful or taboo topic that they did not want to discuss with others. They also feared that being diagnosed with PC would affect their masculinity, sexuality, or social status. They expressed concerns about the side effects of PC treatment, such as impotence or incontinence. Some participants avoided seeking medical care or delayed treatment decisions because of their fear or denial.
– Distrust and dissatisfaction with the health care system and providers. Some participants reported negative experiences with the health care system or providers that made them distrustful or dissatisfied. They felt that they were not treated with respect or dignity, that they were not given enough information or choices about their care, that they were discriminated against because of their race or insurance status, or that they were subjected to unnecessary tests or procedures. Some participants also doubted the effectiveness or safety of PC treatment options or expressed suspicion about the motives of the pharmaceutical industry or researchers.
– Preference for word-of-mouth information from trusted sources. Many participants preferred to get information about PC from their family members, friends, partners, church members, or community leaders who had personal experience with PC or who shared their cultural background or values. They valued word-of-mouth information more than written materials or online sources because they felt it was more credible, relevant, relatable,
or supportive.
These findings suggest that there is a need for improving the health literacy of African-American men with PC across multiple dimensions. Functional health literacy skills are needed to help them read and understand basic health information and services related to PC. Interactive health literacy skills are needed to help them communicate effectively with their health care providers and ask questions about their care. Critical health literacy skills are needed to help them evaluate the quality and reliability of different sources of information and make informed decisions about their treatment options. Furthermore, health literacy interventions should be tailored to the specific needs, preferences, and cultural contexts of African-American men with PC and address the barriers and facilitators that influence their health behaviors.
References
Friedman, D. B., Corwin, S. J., Dominick, G. M., & Rose, I. D. (2009). African American men’s understanding and perceptions about prostate cancer: why multiple dimensions of health literacy are important in cancer communication. Journal of Community Health, 34(5), 449-460.
Harvard Health Publishing. (2021). Level of health literacy affects treatment choice for slow-growing prostate cancer. Retrieved from https://www.health.harvard.edu/blog/level-of-health-literacy-affects-treatment-choice-for-slow-growing-prostate-cancer-202108242579
Miller, D. C., Hall, K. S., Patel, K., Zon, R. T., Chen, R. C., Moran, B. J., … & Royce, T. J. (2018). Impact of prostate cancer diagnosis and treatment on health-related quality of life among older Americans: a population-based study. Cancer, 124(10), 2166-2174.
Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International, 15(3), 259-267.
Ratzan, S.C., & Parker, R.M. (2000). Introduction. In: Selden CR, Zorn M, Ratzan SC, Parker RM (eds) National Library of Medicine Current Bibliographies in Medicine: Health Literacy (NLM Pub No CBM 2000-1). Bethesda: National Institutes of Health.
Song, L., Mishel, M., Bensen, J. T., Chen, R. C., Knafl, G. J., Blackard, B., & Farnan, L. (2012). How does health literacy affect quality of life among men with newly diagnosed clinically localized prostate cancer? Findings from the North Carolina-Louisiana Prostate Cancer Project (PCaP). Cancer, 118(15), 3842-3851.
Vapiwala, N., Miller, D., Laventure, B., Woodhouse, K., Kelly, S., Avelis, J., … & Glanz, K. (2021). Stigma, beliefs and perceptions regarding prostate cancer among Black and Latino men and women. BMC Public Health, 21(1), 1-13.
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