Over the past decade, extensive research and promotion efforts have led to increased awareness and utilization of cancer prevention and screening methods. Many minority groups, however, have not benefited equally from these advances, and continue to have elevated cancer incidence or mortality rates compared with whites.
Over the past decade, extensive research and promotion efforts have led to increased awareness and utilization of cancer prevention and screening methods. Many minority groups, however, have not benefited equally from these advances, and continue to have elevated cancer incidence or mortality rates compared with whites.
Overall cancer survival is low in many minority groups, with 5-year survival rates for Native Americans, blacks, and Hispanics at 34%, 38%, and 47%, respectively vs 50% for whites.[1]
Among women, the highest incidence of colorectal and lung cancers is found in blacks and Alaska Natives, and the highest incidence of cervical cancer is found among Vietnamese and Hispanics. Mortality rates for breast, colorectal, and lung cancer are highest in black women, while black men have the highest rates of prostate, colorectal, and lung cancers and are more likely to die of these cancers than any other racial or ethnic group.[2]
One reason for the high cancer incidence and mortality rates among minorities may be the disproportionately low rates of cancer screening and prevention in these populations. Blacks, Hispanics, other ethnic and racial minorities, the poor, and persons with low literacy have the lowest utilization rates for cancer screening techniques such as mammography, breast self-examination, digital rectal exam, fecal occult blood test, flexible sigmoidoscopy, and Pap smear.[3-14]
Black women have lower rates of mammography even when compared to white women with similar use of primary care services.[5] Among members of the same prepaid health care plan, Hispanic women were more likely to report never having had a mammogram or Pap smear.[9]
Minority groups face many barriers to obtaining equal benefits from cancer prevention and screening, including lack of health insurance, low levels of knowledge and awareness about cancer and cancer screening, cost, inconvenience and lack of time, problems with transportation, lack of physician recommendation, psychological factors such as fear and fatalism, and misunderstanding of recommended screening frequency.[7,15-17]
While many of these factors may also act as barriers to cancer prevention and screening within high-income, high-literacy, or white populations, they disproportionately affect minorities, the poor, and persons with low literacy.
Due at least in part to these barriers, many generalized cancer screening and prevention interventions have failed to reach minorities and medically under-served populations, especially when they have been developed primarily for white, educated populations.[18]
To reach specific underserved populations, strategies to increase awareness and use of cancer screening and prevention must take culture and ethnicity into account, utilizing population-specific, culturally sensitive interventions.
We report on the research of Susan Scrimshaw, PhD, of the University of Illinois at Chicago; Deborah Erwin, PhD, of the Arkansas Cancer Research Center; and Anna Giuliano, PhD, of the Arizona Cancer Center at the University of Arizona, who addressed these issues at the 1999 Robert H. Lurie Comprehensive Cancer Centers Health Policy Symposium.
Dr. Susan Scrimshaws presentation focused on cultural factors that play an important role in cancer survivorship, influencing exposure to carcinogens, prevention, screening, access to screening, quality and maintenance of treatment, and survivor care.
While current studies disagree about the roles of socioeconomic status and ethnicity in cancer survival,[19-25] many studies have documented differences in survival between ethnic groups that persist after adjustment for variables such as age, tumor stage and size, comorbid conditions, and socioeconomic status.[22-24]
Table 1 shows a number of factors related to receiving optimal cancer screening, diagnosis, and treatment that may be influenced by cultural factors.[26]
Current national estimates comparing cancer incidence and mortality of various ethnic groups report statistics according to general categories of ethnicity. Data from the Surveillance, Epidemiology, and End Results (SEER) database are described according to the following ethnic categories: Alaska Native, Native American, black, Chinese, Filipino, Hawaiian, Japanese, Korean, Vietnamese, Hispanic (total), and white (non-Hispanic).[1]
Broad Categorizations
While these statistics are useful as general guidelines to direct attention to high-risk populations, such broad categorizations may mask important correlations between cultural factors and cancer survival rates. Each of these general populations has multiple subpopulations with important and differing cultural influences. For example, the general term Hispanic encompasses persons from Mexico, Cuba, Puerto Rico, and various other South American, Central American, and European countries, with diverse cultural influences, genetic backgrounds, and health beliefs.[27-30]
The black population also consists of many different subpopulations, including those of varied African and Caribbean origins.[30] Similarly, the Native American population is made up of diverse tribes.
Despite existing commonalities between groups, extrapolations of data from one particular subgroup to others that fall under the same broad category may not be valid,[27] and pooling of data on varied subgroups may mask trends or barriers within a specific subpopulation. Furthermore, cultural factors may vary not only by ancestry/background but also by current place of residence.[27]
Cultural factors that vary greatly among subpopulations may play an important role in cancer survivorship, and may be important in developing interventions targeted to specific subpopulations (Table 2). Further research into the impact of these cultural factors within subpopulations will help in the development of successful targeted interventions. See Table 3 for a list of strategies that may be effective in increasing survivorship.
While there have been relatively few well-controlled studies exploring the success of interventions within varied cultures or subcultures, the results of several recent studies indicate that use of culturally sensitive, targeted interventions may be highly successful in increasing awareness and utilization of cancer prevention and screening measures.
Two of these studies, targeted to specific, high-risk subpopulations in rural Arkansas and at the Arizona-Mexico border, have succeeded in raising mammography and breast self-examination (BSE) rates and increasing knowledge about cancer screening and prevention.[31, 32]
The Witness Project, a program that specifically targets rural black women in Arkansas, was designed by Dr. Deborah Erwin and her colleagues to increase rates of breast cancer screening. Although black women have a lower incidence of breast cancer than white women, breast cancer mortality among black women is more than twice that of whites.[1] Additionally, black women, especially those in rural areas, are significantly less likely to have undergone mammography.[33, 34]
While there have been several broad efforts to increase breast cancer screening among blacks, few efforts have focused on specific populations. The Witness Project, initiated in 1990, is a regionally specific, theory-based program that aims to increase awareness about and screening for breast cancer among rural black women.[31]
Founded in an impoverished area of eastern Arkansas along the Mississippi River, the Witness Project targets the low participation in cancer screening by this regions underserved women. Several barriers to screening among the black women targeted have been identified, and include knowledge and beliefs about screening, cost and access, doubts about the success of screening, and negative previous screening experiences.
Many black women in this region see cancer as a death sentence and consider it a private issue that should not be discussed. Moreover, many of the women are deeply religious and may see a cancer diagnosis as a manifestation of Gods will, with which they must not interfere. Additional barriers include a fear or suspicion of the medical system, feelings of powerlessness, and fatalistic attitudes.
The Witness Project is designed to increase cancer screening rates among black women in poor areas by meeting womens beliefs rather than by attempting to change them.[31] Rather than attempting to overcome beliefs of the women about the power of Gods will vs the power of biomedicine, for example, the witness role models present their messages as stories, in a framework that honors the specific culture and local health beliefs of this subpopulation.
To reach the women on their own ground, the project is based in churches, perhaps the most comfortable, supportive place that the targeted women have outside of their homes. Up to 90% of black women in the target region of Arkansas attend church regularly, and most counties have 25 to 60 churches, with congregation size averaging about 100.
Taking its name and its mission from the fundamentalist Christian tradition of witnessing about ones experiences with God, the Witness Project is a church-based program in which women who have survived breast or cervical cancer serve as witness role models, witnessing to their peers and fellow women congregants about their experiences with cancer and/or cancer screening.
During a project session, the women gathered may start and conclude with a hymn and a prayer. The messenger, or witness, speaks from the pulpit, sharing her experiences with screening and cancer. The messengers emphasize the importance of early detection and treatment and of taking responsibility for ones own health, and the need to spread this message throughout the community.
Programs also include teaching of BSE, using an ethnic model, and question and answer sessions. The Projects motto is: In church, people witness to save souls. In the Witness Project, they witness to save lives.
In follow-up studies, participating subjects (n=204) demonstrated significant increases in three categories: (1) ever having had a mammogram, (2) practicing BSE, and (3) reporting having practiced BSE in the last month.[31]
Of women who normally did not get mammography, 23.6% received mammography in the 6 months following the intervention. Of women who did not practice BSE prior to the intervention, 69.4% reported doing so regularly following the intervention, and 60.7% reported practicing BSE in the last month.
Despite these behavioral changes, participants showed no significant change in health beliefs, according to results from surveys taken before and after the intervention.
Thus, by working within a specific cultural framework, the project succeeded in increasing screening rates in this high-risk population.
The goal of the US-Mexican Border Cancer Education Project, designed by Dr. Anna Giuliano and her colleagues, is to increase knowledge of the causes of cancer, cancer screening, and early detection, and ultimately to increase rates of screening within an underserved minority population.
Although Hispanics have lower overall cancer incidence, their overall cancer mortality rate is similar to that of non-Hispanic whites. In addition, Hispanic women are twice as likely as white women to be diagnosed with cervical cancer, and black and Hispanic women have the highest mortality rates from cervical cancer, while Hispanic men have a relatively high incidence of stomach cancer.[1]
Hispanics have been identified by many studies as a high-priority group in which to increase cancer screening rates, as they are less likely to seek preventive health care, less likely to believe in the value of early detection,[27] and less likely to undergo cancer screening.[35] Among Hispanic groups, Mexican Hispanics have been found to believe least in the value of early detection and preventive care.[27]
Targeting Mexican Americans who live in or near the border community of Nogalez, Arizona, the US-Mexican Border Cancer Education Project employs an intervention tailored specifically to this population.[32]
Nogalez is a border town of 20,000 people, 90% of whom are Mexican American, and has one of Santa Cruz countys largest community health centers. The county is 84% Hispanic, and 28% of its residents live below the poverty line. It has been federally designated as a health personnel shortage area and medically underserved area, and has no oncologists.
In 1995, the Juntos Contra el Cancer project received funding to train lay health workers, or promotoras, in Nogalez. The specific aims of the grant were to train and recruit community cancer education and prevention promoters, coordinate education activities, recruit and train cancer survivors as volunteer cancer support group facilitators, and have the facilitators transfer outreach and education skills to a second generation.
The intervention was designed to fit into the cultural framework of the Nogalez area Hispanic community. Accordingly, the health promoters classes were held in the evenings, to accommodate the promoters schedules, and ended with a discussion over dinner. The promoters were major participants in the development of health education materials, working to identify key education messages and target audiences.
The promoters decided to use community-specific language in the brochures, and utilized a simple and noncontroversial visual format incorporating local art designs rather than fancy graphics. The brochures included information on early detection, cancer signs and symptoms, and prevention, and were tested in focus groups in the target community.
A two-armed study was used to evaluate the effectiveness of the brochures and health promoters. Households in the intervention arm received two visits. During the first visit they took a preinterven-tion test and were given the intervention brochures. During the second visit, the health promoters discussed the material in the brochures with the members of the household. In the comparison arm, only one visit was made. The participants took a pretest and were given the standard NCI materials. Two months later, all participants were given a follow-up test.
Participants in the intervention arm showed a significantly greater increase in knowledge of the factors involved in cancer prevention, screening, and detection, compared with those in the comparison arm. While no increase in screening behaviors was seen for either group, the time period monitored may have been too short to detect such a change.
Overall, the program succeeded in transferring knowledge to the community-based health promoters, designing and producing community-specific brochures, transferring skills to a second generation of promoters, and increasing cancer knowledge in the community. The current goal is to work toward continuous, increased screening practices and to expand the program to other locations.
The continued low screening rates and lack of success of most general interventions among minority populations point to a need for increased research into barriers to screening within specific populations and increased efforts to develop and test the effectiveness of culturally specific, targeted interventions.
While there have been relatively few trials of interventions designed to increase cancer screening and prevention within specific minority subpopulations, several studies have indicated that such strategies may be highly successful.
In addition to the Witness Project and the US-Mexico border project, other successful cancer screening and prevention interventions include efforts targeting Native American women in Northern California, low-income Hispanic women in San Diego, Cambodian women in Olmsted County, Minnesota, and older black women in a rural county in North Carolina.[36-39]
These interventions worked within established community frameworks, utilizing black and Hispanic lay health workers, Native American womens talking circles, and culturally acceptable informational and screening methods to increase breast and cervical cancer screening rates among these specific minority populations.
The success of these programs indicates that although rates of participation in cancer screening and prevention among minorities continue to lag behind those of the overall population, culturally specific interventions can play an important role in increasing knowledge, screening, and prevention in these populations. Such efforts must be prioritized to allow underserved minority populations to benefit equally from advances in cancer screening and prevention.
1. Miller BA, Kolonel LN, Bernstein L, et al (eds): Racial/Ethnic Patterns of Cancer in the United States 1988-1992. Bethesda, Md, National Cancer Institute, 1996.
2. American Cancer Society: Cancer Facts and Figures 2000. New York, American Cancer Society, Inc., 2000.
3. Fernandez ME, DeBor M, Candreia MJ, et al: Evaluation of ENCOREplus: A community-based breast and cervical cancer screening program. Am J Prev Med 16(suppl 3):35-49, 1999.
4. Martin LM, Calle EE, Wingo PA, et al: Comparison of mammography and Pap test use from the 1987 and 1992 National Health Interview Surveys: Are we closing the gaps? Am J Prev Med 12:82-90, 1996.
5. Burns RB, McCarthy EP, Freund KM, et al: Black women receive less mammography even with similar use of primary care. Ann Intern Med 125:173-182, 1996.
6. The National Cancer Institute Cancer Screening Consortium for Underserved Women: Breast and cervical cancer screening among underserved women. Arch Fam Med 4:617-624, 1995.
7. Mickey RM, Durski MS, Worden JK, et al: Breast cancer screening and associated factors for low-income African-American women. Preventive Medicine 24:467-476, 1995.
8. Breen N, Kessler L: Changes in the use of screening mammography: Evidence from the 1987 and 1990 National Health Interview Surveys. Am J Public Health 84:62-67, 1994.
9. Perez-Stable EJ, Otero-Sabogal R, Sabogal F, et al: Self-reported use of cancer screening tests among Latinos and Anglos in a prepaid health plan. Arch Intern Med 154:1073-1081, 1994.
10. Calle EE, Flanders WD, Thun MJ, et al: Demographic predictors of mammography and Pap smear screening in US women. Am J Public Health 83:53-60, 1993.
11. Harper AP: Mammography utilization in the poor and medically underserved. Cancer 72:1478-1482, 1993.
12. Caplan LS, Wells BL, Haynes S: Breast cancer screening among older racial/ethnic minorities and whites: Barriers to early detection. J Gerontol 47:101-110, 1992.
13. Harlan LC, Bernstein AB, Kessler LF: Cervical cancer screening: Who is not screened and why? Am J Public Health 81:885-890, 1991.
14. Healthy People 2000: National Health Promotion and Disease Prevention Objectives. Washington, DC, Public Health Service; 1991, US Dept of Health and Human Services publication No. (PHS) 91-50212.
15. Valdini A, Cargill LC: Access and barriers to mammography in New England community health centers. J Fam Pract 45:243-249, 1997.
16. Burack RC, Liang J: The Acceptance and completion of mammography by older black women. Am J Public Health 79:721-726, 1989.
17. Rimer BK, Keintz MK, Kessler HB, et al: Why women resist screening mammography: Patient-related barriers. Radiology 172:243-246, 1989.
18. Haynes MA, Smedley BD (eds): The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC, National Academy Press, 1999.
19. Yood MU, Johnson CC, Blount A, et al: Race and differences in breast cancer survival in a managed care population. J Natl Cancer Inst 91:1487-1491, 1999.
20. Franzini L, Williams AF, Franklin J, et al: Effects of race and socioeconomic status on survival of 1,332 black, Hispanic, and white women with breast cancer. Ann Surg Oncol 4:111-118, 1997.
21. Morgan MA, Behbakht K, Benjamin I, et al: Racial differences in survival from gynecologic cancer. Obstetrics & Gynecology 88:914-918, 1996.
22. Simon MS, Severson RK: Racial differences in survival of female breast cancer in the Detroit metropolitan area. Cancer 77:308-314, 1996.
23. Delgado DJ, Lin WY, Coffey M: The role of Hispanic race/ethnicity and poverty in breast cancer survival. Puerto Rico Health Sciences Journal 14(2):103-116, 1995.
24. Eley JW, Hill HA. Chen VW, et al: Racial differences in survival from breast cancer: Results of the National Cancer Institute Black/White Cancer Survival Study [see comments]. JAMA 272:947-954, 1994.
25. Bain RP, Greenberg RS, Chung KC: Racial differences in survival of women with endometrial cancer. Am J Obstet Gynecol 157(4 Pt 1):914-923, 1987.
26. Crane LA, Kaplan CP, Bastani R, et al: Determinants of adherence among health department patients referred for a mammogram. Women & Health 24(2):43-64, 1996.
27. Modiano MR, Villar-Werstler P, Meiser J, et al: Cancer in Hispanics: Issues of concern. J Natl Cancer Inst Monographs 18:35-39, 1995.
28. Ramirez AG, Villarreal R, Suarez L, et al: The emerging Hispanic population: A foundation for cancer prevention and control. J Natl Cancer Instit Monographs 18:1-9, 1995.
29. Giuliano A: Cancer prevention among US Hispanics (editorial). Arch Intern Med 154:1057-1066, 1994.
30. Trapido EJ, Chen F, Davis K, et al: Cancer in South Florida Hispanic women. Arch Intern Med 154:1083-1088, 1994.
31. Erwin DO, Spatz TS, Stotts RC, et al: Increasing mammography and breast self-examination in African American women using the Witness Project model. J Cancer Ed 11:210-215, 1996.
32. Giuliano A: Summary of research activities: Cancer prevention and community research. www.azcc.arizona.edu/whos_who/w_giuliano.htm.
33. American Cancer Society: Cancer Risk Report. Atlanta, American Cancer Society, Publication No. 92-25M-No. 8604, 1992.
34. Harris RP, Fletcher SW, Gonzalez JJ, et al: Mammography and age: Are we targeting the wrong women? A community survey of women and physicians. Cancer 67:2010-2014, 1991.
35. Perez-Stable J, Sabogal F, Otero-Sabogal R: Use of cancer-screening tests in the San Francisco Bay Area: Comparison of Latinos and Anglos. J Natl Cancer Instit Monographs 18:147-153, 1995.
36. Hodge FS, Fredericks L, Rodrequez B: American Indian womens talking circle: A cervical cancer screening and prevention project. Cancer 78:1592-1597, 1996.
37. Kelly AW, Chacori MMF, Wollan PC, et al: A program to increase breast and cervical cancer screening for Cambodian women in a Midwestern community. Mayo Clin Proc 71:437-444, 1996.
38. Navarro AM, Senn KL, Kaplan RM, et al: Por La Vida intervention model for cancer prevention in Latinas. J Natl Cancer Instit Monographs 18:137-145, 1995.
39. Eng E, Smith J: Natural helping functions of lay health advisors in breast cancer education. Breast Cancer Research and Treatment 35:23-29, 1995.