A national agenda for Latino cancer prevention and control†
This article is a US Government work and, as such, is in the public domain in the United States of America.
Although cancer is a leading cause of morbidity and premature death among Latinos, there is limited knowledge of cancer-related issues and priorities of greatest significance to the Latino population, the largest minority group in the nation. This information is vital in helping to guide Latino cancer research, training, and awareness efforts at national, regional, and local levels. To help identify cancer issues of greatest relevance to Latinos, Redes En Acción, The National Hispanic/Latino Cancer Network, a major network among the National Cancer Institute's Special Populations Networks, conducted a survey of 624 key opinion leaders from around the country. Respondents were asked to rank the three cancer sites most important to Latinos in their region and the five issues of greatest significance for this population's cancer prevention and control. Recommendations were prioritized for three specific areas: 1) research, 2) training and/or professional education, and 3) awareness and/or public education. Among cancers, breast carcinoma was ranked number one, followed in order by cervical and lung carcinomas. The issues of greatest significance to Latinos were 1) access to cancer screening and care, 2) tobacco use, 3) patient–doctor communication, 4) nutrition, and 5) risk communication. This survey solicited information from scientists, health care professionals, leaders of government agencies, professional and community-based organizations, and other stakeholders in Latino health. The results laid the foundation for a national Redes En Acción Latino cancer agenda, thus providing a useful tool for individuals and organizations engaged in cancer prevention and control efforts among the Hispanic–Latino population. Cancer 2005. Published 2005 by the American Cancer Society.
In 2003, the Latino population grew to more than 39 million persons, or 13% of the total U.S. population,1 and has become the nation's largest minority group. As in other U.S. populations, cancer is a leading cause of morbidity and premature death in this growing minority group.2–4 The cancer profile of the overall Latino population, including specific cancer-related morbidity and mortality rates, as well as behavioral, socioeconomic, and cultural risk factors, is difficult to characterize because of the diversity of Latino subgroups (Mexican Americans, Puerto Ricans, Cubans, Central Americans, South Americans), whose risk behaviors, practices, and access to care vary widely.5–10
Latinos are affected by many economic and cultural disparities in health care,11 including unequal participation in federally funded health research based on insufficient allocation of resources, considering the burden of disease, the changing demographic picture of the nation, and the scientific opportunities inherent in the study of this population.2 Also, the lack of involvement of Latinos–Hispanics in health research has hindered the development of prevention and treatment efforts for Latinos and limited the scope of comparative studies of cultural and genetic factors that influence disease processes.
The National Cancer Institute has recognized the need to more effectively involve Latinos and other cultural groups in health research and education. To accomplish this, the diverse national Latino community must be engaged throughout the process, particularly in preliminary research planning and initial selection of objectives and priorities for study and action. The research reported in the current study provided an opportunity to solicit participation from Latino communities throughout the nation and to invite key opinion leaders in every region to assist in identification and prioritization of the types of cancer and the cancer-related issues of primary significance to the nation's ever-expanding Latino population. The purpose of the research project was to collect data necessary to formulate a national agenda that could serve as an effective tool in guiding national, regional, and local policy makers engaged in cancer prevention and control efforts among Latinos.
MATERIALS AND METHODS
This participatory research activity12 was carried out by Redes En Acción: The National Hispanic/Latino Cancer Network, a major Special Populations Networks initiative supported by the National Cancer Institute. The goal of Redes En Acción is to promote cancer research, training, and awareness among Latinos. The Redes En Acción network consists of a coordinating national network center (NNC) at Baylor College of Medicine in San Antonio and Houston, Texas, and six regional network centers (RNCs) with advisory committees who represented their communities. The regional offices, located in cities with large Latino populations, are situated in universities and comprehensive cancer centers. The RNCs include San Diego, San Francisco, San Antonio, Chicago, New York, and Miami.
In developing a national Latino cancer research agenda, Redes En Acción initiated a process of issue identification and recommendation prioritization aimed at: Step 1) eliciting guidance of a national experts committee of authorities in Latino health and, in particular, cancer health; Step 2) receiving input from regional advisory committees serving the RNCs (composed of similar experts in different regions of the country); Step 3) soliciting input from a broad range of Latino cancer health stakeholders throughout the United States by means of a key opinion leaders survey; and Step 4) assessing data from this key opinion leader survey for synthesis into a final summary document. The methodology used in these steps is as follows:
To identify and prioritize Latino cancer issues, a national meeting of leading Latino cancer researchers, scientists, and health-serving organization leaders was held in August 2000. This group comprised the Redes En Acción National Steering Committee (NSC), a body of 40 delegates from academic institutions and federal and private entities who reflect a broad spectrum of backgrounds and views. This group of experts was asked to identify issues in cancer prevention and control that have the greatest impact on Latinos. NSC delegates were given background papers on a wide range of cancer prevention and control topics (e.g., tobacco use, nutrition, infectious agents, quality of life). Over a 2-day period, working groups formulated the most critical needs in three areas: 1) research, 2) training and/or professional education, and 3) awareness and/or public education. As a result of this extensive discussion, debate, and prioritization, recommendations that addressed these three areas for various cancer-related issues were proposed.
The slate of issues and recommendations developed by the NSC was then reviewed by regional panels of experts within the Redes En Acción network (San Antonio, San Diego, San Francisco, Chicago, Miami, New York). Information gathered from these regional advisors was incorporated into the summary of recommendations, which formed the basis of a survey instrument designed to gather information on cancer priorities of a sample of key opinion leaders within the Hispanic–Latino community. To develop the survey instrument, an executive committee of the Redes En Acción Network reviewed all issues for clarity and nonduplication. The instrument was pilot tested among selected individuals at Regional Network Center sites, and minor changes were made to the final official survey.
Each of the Redes En Acción regional sites was asked to survey at least 100 key opinion leaders within their region, and five of the six RNCs achieved that goal: New York (108), Chicago (88), Miami (106), San Antonio (105), San Diego (112), and San Francisco (105). The 624 key opinion leaders that were surveyed represented a variety of stakeholders in Latino health, including researchers, health care professionals, and leaders of government agencies and community-based organizations.
After providing demographic information, respondents were asked to rank the three cancer sites that they felt were most important to Latinos in their region (e.g., breast, cervical, colorectal) with “1” indicating the most important. Next, from a list of 14 cancer issues, respondents were asked to rank the 5 that they felt were the most important to cancer prevention and control among Latinos. The cancer issues presented were tobacco use, nutrition, infectious agents, occupation and environment, alcohol, physical activity and weight management, sexual practices, access to cancer screening and care, patient–doctor communication, risk communication, clinical trials or medical study participation, genetic testing and education, cancer survivorship, and quality of life. Participants also were given the option of selecting “other” as a cancer-issue category. Respondents chose the top five, giving a “1” to the most important, “2” to the next most important, etc. Finally, specific recommendations within the areas of research, professional health education, and public education were presented for the 14 cancer-related issues. Respondents were asked to rank the recommendations of the National Steering Committee within the 3 areas for all 14 issues and to rank the 3 priority cancer sites.
For purposes of analysis, responses were reverse coded so that issues that were ranked high had higher means (e.g., 1 = 5, 2 = 4, 3 = 3, 4 = 2, 5 = 1). An expert review panel assessed this data and synthesized the issues and recommendations into a final report. Tables 1–6 present specific recommendations for the top three cancer sites and the top five cancer issues for research, health professional education, and public education.
Table 1. Recommendations for the Five Most Important Cancer Research Issues
|Access to cancer screening or care||Study differences in quality of physician care in different settings, such as HMOs, comparing Latinos to other race or ethnic groups|
|Tobacco use||Study adolescent smoking onset and continuation|
|Patient-doctor communication||Study strategies to improve communication, decision-making and behavioral skills among Latino patients|
|Nutrition||Study the effects of dietary factors on all cancers|
|Risk communication||Study how to communicate cancer risks to patients|
Table 2. Recommendations for the Three Most Important Cancer Research Sites
|Breast||Study protective factors that contribute to lower incidence of breast carcinoma|
|Colon and rectum||Study the most effective methods for health care professionals to communicate risk to patients|
|Prostate||Study patient-doctor communications, especially adverse consequences of tests|
Table 3. Recommendations for the Five Most Important Cancer Issues for Health Professional Education
|Access to cancer screening or care||Train health providers and researchers in cultural competency (sensitivity to Latino culture, norms, etc.) and interpersonal client-patient communication skills|
|Tobacco use||Educate healthcare professionals to help prevent smoking in Hispanic-Latino youth|
|Patient-doctor communication||Train more Spanish-speaking physicians, nurses, and physician assistants|
|Nutrition||Educate school district food service personnel|
|Risk communication||Improve cultural competency of health care professionals|
Table 4. Recommendations for the Three Most Important Cancer Sites for Health Professional Education
|Breast||Improve cultural competency of health care professionals|
|Colon and rectum||Improve patient-doctor communication concerning screening tests|
|Prostate||Improve patient-doctor communication concerning screening tests|
Table 5. Recommendations for the Five Most Important Cancer Issues for Public Education
|Access to cancer screening or care||Develop partnerships with Latino-oriented community-based organizations regarding treatment and prevention|
|Tobacco use||Establish partnerships with media and corporations that support tobacco control programs|
|Nutrition||Educate the public about cancer and nutrition|
|Risk communication||Develop culturally competent public communication programs|
Table 6. Recommendations for the Three Most Important Cancer Sites for Public Education
|Breast||Develop programs to increase awareness, encourage positive behaviors, and counter common misconceptions about breast cancer|
|Colon and rectum||Educate the public about the importance of colon cancer screening|
|Prostate||Educate the public about the importance of prostate cancer screening|
Of 624 survey participants, 64% were Latino, 28% non-Latino white, and 8% were Other. Participants from academic institutions had a 48% representation in the survey, and community-based organizations represented 52% of survey participants. Among those from community-based organizations, the greatest proportion identified themselves as “directors”, and the next largest group identified themselves as health care providers (nurses and medical doctors). Areas of expertise of the respondents are shown in Table 7. The majority of participants were female (68%) and age ≥ 40 years (64%). Of Latino participants, 41% were Mexican American, 17% Puerto Rican, 15% South American, 10% Cuban, 7% Central American, and 11% Other Latino.
Table 7. Demographic Characteristics of Key Opinion Survey Participants (n = 624)
|Organization type|| || |
| Academic or cancer center||222||48.2|
|Gender|| || |
|Age|| || |
|Ethnicity or race|| || |
| Native American||3||0.5|
| Asian-Pacific Islander||18||2.9|
| Mexican American||161||40.5|
| Cuban American||38||9.6|
| Puerto Rican||69||17.4|
| Central American||27||6.8|
| South American||58||14.6|
|Area of expertise|| || |
| Research and training|| || |
| Professional education||212||34.4|
| Basic science||62||9.9|
| Clinical science||155||24.8|
| Behavioral and social||157||25.2|
| Health services or outcomes research||129||20.7|
|Awareness|| || |
| Counseling or support services||191||30.6|
| Community outreach||321||51.4|
| Health care service provider||181||29.0|
| Information resource or clearing house||143||22.9|
Key opinion leaders ranked breast carcinoma as the most important cancer site for cancer prevention and control within their Latino communities. Cervical carcinoma was ranked second, followed in order by lung, prostate, colorectal, liver, and stomach carcinomas. Table 8 shows the rank order, determined by survery participants, of 14 surveyed cancer issues. The top-ranked issue was access to cancer screening and care, followed by tobacco use. Patient–doctor communication was ranked significantly lower than these two issues, as were the other topics. Access to cancer screening and care was the top issue, regardless of ethnicity (Latino or non-Latino) or organizational type (academic or community center). Men ranked tobacco use as the top issue over access to care.
Table 8. Most Important Cancer Issues (n = 624)
|Access to cancer screening and care||1||3.01||1.94|
|Physical activity and weight management||6||1.05||1.58|
|Occupation and environment||9||0.69||1.33|
|Quality of life||10||0.54||1.17|
|Clinical trial or medical study participation||11||0.49||1.12|
|Genetic testing and education||14||0.18||0.74|
In addition to gathering priority data on the most significant cancer issues and primary cancer sites, the survey solicited key opinion leaders for recommendations on each of these issues and cancer sites in the areas of research, professional health education, and public education. The primary recommendation for each issue or site in these areas is presented in Tables 1–6.
Access to cancer screening and care (number one issue)
Survey participants believed the primary research priority was to ascertain differences in quality of care for Latinos in various settings and compare this information to other racial and/or ethnic groups. Respondents felt that professional training should be focused on cultural competency and interpersonal client–patient communication skills. With regard to public education, the emphasis was on developing partnerships with community-based organizations to raise awareness.
Research should be primarily focused on adolescent smoking patterns. Similarly, it was felt that health care professionals should receive more education in preventing Latino youths from smoking. To further public education, survey participants suggested working with media and corporations that support tobacco-control programs.
Survey respondents placed greatest importance on researching strategies to improve communication, decision-making, and behavioral skills among patients. The top professional education goal should be to train more Spanish-speaking providers and staff.
More research is needed on dietary factors that affect all types of cancer, the survey participants emphasized. The priority recommendation regarding professional education focused on youth, in particular, educating school districts about nutrition in their food services. In addition, public awareness about cancer and nutrition should be a top priority.
Finding the most effective means of communicating cancer risk to patients should be the major research emphasis. As with access to screening and care, survey participants felt that improvements in cultural competency of providers should be emphasized in professional education efforts. Similarly, respondents believed that culturally appropriate public communication programs are vital to effecting an improvement of cancer awareness in Latino–Hispanic communities.
Cancer sites (breast, colorectal, prostate)
Survey participants reported that their top breast carcinoma research recommendation was to learn more about the causes of lower incidence among Latinas than other populations and to determine what protective factors may be involved. Research recommendations also focused on studying doctor–patient communications, particularly with regard to helping patients make the optimal treatment choice after screening, such as in the case of prostate carcinoma. Professional education priorities include improving cultural competency of health care professionals with regard to breast carcinoma and improving doctor–patient communication for colorectal and prostate carcinoma screening. Breast carcinoma public education should focus on increasing awareness, encouraging positive behaviors, and addressing common misconceptions, according to respondents. For colorectal and prostate carcinomas, the priority recommendation was to educate the public about the importance of screening.
The employed research process proved effective in achieving broad participation from diverse Latino groups. Despite regional and ethnic diversity, there was agreement on main priorities. It is not surprising that access to health services ranked at the top, as Latino populations are among those that suffer most from disparities in cost and availability of care.13 It is important to note that communication barriers were also identified as part of the access problem and that research and education to improve physician–patient communication were among the top priorities for both public and professional education.
Findings of the survey, which provided the basis for development of the Redes En Acción Latino Cancer Report: Summary Recommendations for a National Hispanic/Latino Cancer Control Agenda, have helped guide Redes En Acción in promoting Latino cancer research, training, and public education. In addition, the report provides advisory guidelines for agencies and organizations, including national, regional, and local policy makers. Because Latinos are the largest and fastest-growing minority population in the country, it is extremely important that resources and strategies used to fight cancer be targeted as precisely as possible. The survey findings and subsequent Latino Cancer Report are intended to be a useful tool for organizations and programs engaged in this effort in Hispanic–Latino communities.
Although the broad impact of this research project is yet to be determined, the project has already and clearly influenced Latino cancer research, training, and public education efforts of Redes En Acción. A good example is the nationwide range of activities that address access to care and screening. Recognizing the perceived importance of using community lay health workers to deliver patient education for effective navigation of the health care system, several of the Redes En Acción sites have begun projects to test different forms of community outreach and in-clinic assistance. In the South Central Region, coordinated in San Antonio, pilot research is being conducted on how peer leaders can encourage low-income Latina women to use services for breast carcinoma prevention and treatment. In the Northwest Region (San Francisco), cancer prevention training sessions are being conducted for lay health workers who perform home visits and promote the use of local health services, especially cancer control and treatment services among underserved Latinos. In the Northeast Region (New York), the Redes En Acción program was instrumental in training outreach workers, who in turn assist Latina women in receiving breast carcinoma screening services and treatment follow-up when necessary.
Professional health education concerns are centered on a lack of trained Latino health care providers and on cultural gaps in communication among diverse Latino and non-Latino groups. To address these issues, Redes En Acción has developed an ongoing partnership with the National Hispanic Medical Association (NHMA). Programs have been developed to increase Latino preparation and participation in education for the health professions, including a mentorship and professional development program to prepare Latino investigators to conduct National Institutes of Health (NIH) research. Latino physicians have been surveyed to assess patient education competency and practices, and outreach activities have been organized to train providers in cross-cultural communication skills. Redes En Acción project leaders and the NHMA have also developed public education activities through partnerships with Latino-focused national, regional, and local community organizations, emphasizing awareness of access disparities and advocacy for actions to reduce them.
Tobacco use, determined by the key opinion leaders survey to be the number two priority cancer issue, is a major cancer issue for all populations, and the survey respondents clearly support research, training, and awareness efforts to reduce Latino tobacco use, particularly among adolescents. In a program called Sin Fumar, Redes En Acción researchers partnered with a local health agency and a city school district in Laredo, Texas, to give middle school and high school students tools to avoid the smoking habit. In another research project, the Mass Media Intervention to Reduce Youth Smoking, Redes En Acción researchers worked with the University of Vermont to develop a comprehensive mass media campaign. With the help of children and teens, television and radio advertisements were produced to reduce the prevalence of cigarette smoking among youths in Grades 4 through 12 in San Antonio, Texas, and Miami, Florida. In regional research sites, Redes En Acción investigators have conducted a number of tobacco-related initiatives, such as Using Tobacco Industry Marketing Research to Develop New Tobacco Control Interventions for Young Adults in the Redes En Acción Northwest Region and Smoking Prevention for Latino Middle School Students in the Southwest Region. In addition, Redes En Acción pilot research projects at regional sites include studies that test nicotine dependence and pharmacotherapy methods, improving Latino physician tobacco-related communication with patients, and promoting smoking cessation practices of Latino smokers.
Redes En Acción teamed with the Latino Council on Alcohol and Tobacco (LCAT) to create a national network of experts, researchers, and community-based organizations working on tobacco prevention and control. The LCAT National Hispanic/Latino Tobacco Prevention and Control Network (NHLTPAC Network) is responsible for expanding leadership training, enhancing current networks with tobacco control, and fortifying existing tobacco prevention and control efforts that target diverse Latino subgroups across the country. The NHLTPAC Network conducts “mini-summit” meetings in conjunction with Redes En Acción Regional Network Centers (RNCs). In addition, the NHLTPAC Network and the Redes En Acción RNCs collaborate in training and mentoring tobacco prevention and control fellows at each site, as well as in identifying tobacco control research priorities.
The relation between nutrition and cancer ranked fourth among the key observer survey priorities. Redes En Acción is pursuing research opportunities in this area, including a recently approved NCI-funded formative research project to assess knowledge, attitude, and behavior toward nutrition and exercise (i.e., energy balance) among low-income Latina women > 40 years of age in Houston, Texas. Drawing on the NCI's and Center for Disease Control's (Atlanta, Georgia) best-practices resources, several evidence-based social-support interventions have been identified, and these will form the foundation for replication of an energy-balance intervention among low-income Latinos. From Houston's East End barrios, Redes En Acción will recruit 144 Latina women to attend focus groups to discuss energy balance and criteria for effective interventions to improve nutrition and exercise and will interview 15–20 key informants (representatives from several Catholic churches, grocery distributors, mass media, and other relevant community representatives) to discuss the potential for a church-based energy-balance intervention in this community. These data will be reported and are expected to produce recommendations for design, implementation, and evaluation of an evidence-based intervention to promote energy balance among Latina women.
The methodology employed in key opinion leaders survey-research had some limitations. Participants were not randomly selected, which could affect the generalization of results and make selection bias possible. In addition, responses could have been influenced by the questionnaire length and format and, consequently, could have produced less accurate responses. However, the process used was an effective way to obtain broad participation from different Latino groups across the United States.
The cancer priority issues and recommendations provided by the key opinion leaders survey and the subsequent Latino Cancer Report may be unique to the composition of experts committees and survey participants, as well as to the process employed by Redes En Acción in conducting this project. However, the recommendations were useful to the Redes En Acción initiative for setting goals and objectives, as well as for contributing a growing list of organizations engaged in the identification of priorities among their own constituents. Future research may seek to compile and compare results of organizations' recommendations formulated periodically to describe trends in the perspectives of stakeholders in Latino cancer control and prevention issues across the United States.