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A national agenda for Latino cancer prevention and control

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A national agenda for Latino cancer prevention and control
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  C O M M E N T A R Y Supported through  Redes En Accio´n  , a programfunded by the National Cancer Institute, Bethesda,Maryland, Grant No. U01-CA86117. Address for reprints: Amelie G. Ramirez, Dr.P.H.,Deputy Director, Chronic Disease Prevention andControl Research Center, Baylor College of Medi-cine, 8207 Callaghan Road, Suite 110, San Anto-nio, TX 78230. Fax: (210) 348-0554; E-mail:aramirez@bcm.tmc.eduReceived January 18, 2005; accepted January 25,2005.*This article is a US Government work and, assuch, is in the public domain in the United Statesof America. A National Agenda for LatinoCancer Prevention and Control Amelie G. Ramirez,  Dr.P.H. 1,2 Kipling J. Gallion,  M.A. 1 Lucina Suarez,  Ph.D. 3 Aida L. Giachello,  Ph.D. 4 Jose R. Marti,  M.D. 5 Martha A. Medrano,  M.D., M.P.H. 6 Eliseo J. Pe´rez-Stable,  M.D. 7 Gregory A. Talavera,  M.D., M.P.H. 8 Edward J. Trapido,  Sc.D. 9 1 Department of Medicine, Baylor College of Medicine, Houston, Texas. 2 Baylor College of Medicine Cancer Center, San Antonio Cancer Institute, San Antonio, Texas. 3 Epidemiology Research Services, Texas Department of Health, Austin, Texas. 4 Jane Addams College of Social Work, University of Illinois at Chicago, Chicago, Illinois. 5 Department of Surgery, The Brooklyn Hospital Center, New York, New York. 6 Deparment of Psychiatry, The University of Texas Health Science Center at San Antonio, San Antonio, Texas. 7 Department of Medicine, The University of California at San Francisco, San Francisco, California. 8 Graduate School of Public Health, San Diego State University, San Diego, California. 9 Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland.  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 signifi-cance to the Latino population, the largest minority group in the nation. This infor-mation is vital in helping to guide Latino cancer research, training, and awarenessefforts at national, regional, and local levels. To help identify cancer issues of greatestrelevance to Latinos,  Redes En Accio´n  , 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 wereaskedtorankthethreecancersitesmostimportanttoLatinosintheirregionandthe five issues of greatest significance for this population’s cancer prevention andcontrol. 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 communica-tion, 4) nutrition, and 5) risk communication. This survey solicited information fromscientists, health care professionals, leaders of government agencies, professional andcommunity-based organizations, and other stakeholders in Latino health. The resultslaid the foundation for a national  Redes En Accio´n   Latino cancer agenda, thus provid-ing a useful tool for individuals and organizations engaged in cancer prevention andcontrol efforts among the Hispanic–Latino population.  Cancer   2005;103:2209–15. Published 2005 by the American Cancer Society. * KEYWORDS: Latinos, Hispanics, cancer priorities, research, professional training,public education.2209 Published 2005 by the American Cancer Society*DOI 10.1002/cncr.21053Published online 8 April 2005 in Wiley InterScience (www.interscience.wiley.com).  I n 2003, the Latino population grew to more than 39million 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 causeof morbidity and premature death in this growing minority group. 2–4 The cancer profile of the overallLatino population, including specific cancer-relatedmorbidity and mortality rates, as well as behavioral,socioeconomic, and cultural risk factors, is difficult tocharacterize because of the diversity of Latino sub-groups (Mexican Americans, Puerto Ricans, Cubans,Central Americans, South Americans), whose risk be-haviors, practices, and access to care vary widely. 5–10 Latinos are affected by many economic and cul-tural disparities in health care, 11 including unequalparticipation in federally funded health researchbased on insufficient allocation of resources, consid-ering the burden of disease, the changing demo-graphic picture of the nation, and the scientific oppor-tunities inherent in the study of this population. 2  Also,the lack of involvement of Latinos–Hispanics in healthresearch has hindered the development of preventionand treatment efforts for Latinos and limited the scopeof comparative studies of cultural and genetic factorsthat influence disease processes.The National Cancer Institute has recognized theneed to more effectively involve Latinos and othercultural groups in health research and education. Toaccomplish this, the diverse national Latino commu-nity must be engaged throughout the process, partic-ularly in preliminary research planning and initial se-lection of objectives and priorities for study andaction. The research reported in the current study provided an opportunity to solicit participation fromLatino communities throughout the nation and to in-vite key opinion leaders in every region to assist inidentification and prioritization of the types of cancerand the cancer-related issues of primary significanceto the nation’s ever-expanding Latino population. Thepurpose of the research project was to collect datanecessary to formulate a national agenda that couldserve as an effective tool in guiding national, regional,and local policy makers engaged in cancer preventionand control efforts among Latinos. MATERIALS AND METHODS This participatory research activity  12  was carried outby   Redes En Accio´n  : The National Hispanic/LatinoCancer Network, a major Special Populations Net- works initiative supported by the National Cancer In-stitute. The goal of   Redes En Accio´n   is to promotecancer research, training, and awareness among Lati-nos. The  Redes En Accio´n   network consists of a coor-dinating national network center (NNC) at Baylor Col-lege of Medicine in San Antonio and Houston, Texas,and six regional network centers (RNCs) with advisory committees who represented their communities. Theregional offices, located in cities with large Latinopopulations, are situated in universities and compre-hensive cancer centers. The RNCs include San Diego,San Francisco, San Antonio, Chicago, New York, andMiami.In developing a national Latino cancer researchagenda,  Redes En Accio´n   initiated a process of issueidentification and recommendation prioritizationaimed at: Step 1) eliciting guidance of a national ex-perts committee of authorities in Latino health and, inparticular, cancer health; Step 2) receiving input fromregional advisory committees serving the RNCs (com-posed of similar experts in different regions of thecountry); Step 3) soliciting input from a broad range of Latino cancer health stakeholders throughout theUnited States by means of a key opinion leaders sur-vey; and Step 4) assessing data from this key opinionleader survey for synthesis into a final summary doc-ument. The methodology used in these steps is asfollows: Step 1.  To identify and prioritize Latino cancer issues,a national meeting of leading Latino cancer research-ers, scientists, and health-serving organization leaders was held in August 2000. This group comprised the Redes En Accio´n   National Steering Committee (NSC), abody of 40 delegates from academic institutions andfederal and private entities who reflect a broad spec-trum of backgrounds and views. This group of experts was asked to identify issues in cancer prevention andcontrol that have the greatest impact on Latinos. NSCdelegates were given background papers on a widerange of cancer prevention and control topics (e.g.,tobacco use, nutrition, infectious agents, quality of life). Over a 2-day period, working groups formulatedthe most critical needs in three areas: 1) research, 2)training and/or professional education, and 3) aware-ness and/or public education. As a result of this ex-tensive discussion, debate, and prioritization, recom-mendations that addressed these three areas forvarious cancer-related issues were proposed. Step 2.  The slate of issues and recommendations de-veloped by the NSC was then reviewed by regionalpanels of experts within the  Redes En Accio´n   network (San Antonio, San Diego, San Francisco, Chicago, Mi-ami, New York). Information gathered from these re-gional advisors was incorporated into the summary of recommendations, which formed the basis of a survey instrument designed to gather information on cancerpriorities of a sample of key opinion leaders within the 2210 CANCER June 1, 2005 / Volume 103 / Number 11  Hispanic–Latino community. To develop the survey instrument, an executive committee of the  Redes En  Accio´n   Network reviewed all issues for clarity and non-duplication. The instrument was pilot tested among selected individuals at Regional Network Center sites,and minor changes were made to the final officialsurvey. Step 3.  Each of the  Redes En Accio´n   regional sites wasasked to survey at least 100 key opinion leaders withintheir region, and five of the six RNCs achieved thatgoal: New York (108), Chicago (88), Miami (106), San Antonio (105), San Diego (112), and San Francisco(105). The 624 key opinion leaders that were surveyedrepresented a variety of stakeholders in Latino health,including researchers, health care professionals, andleaders of government agencies and community-based organizations. After providing demographic information, re-spondents were asked to rank the three cancer sitesthat they felt were most important to Latinos in theirregion (e.g., breast, cervical, colorectal) with “1” indi-cating the most important. Next, from a list of 14cancer issues, respondents were asked to rank the 5that they felt were the most important to cancer pre-vention and control among Latinos. The cancer issuespresented were tobacco use, nutrition, infectiousagents, occupation and environment, alcohol, physi-cal activity and weight management, sexual practices,access to cancer screening and care, patient–doctorcommunication, risk communication, clinical trials ormedical study participation, genetic testing and edu-cation, cancer survivorship, and quality of life. Partic-ipants also were given the option of selecting “other”as a cancer-issue category. Respondents chose the topfive, giving a “1” to the most important, “2” to the nextmost important, etc. Finally, specific recommenda-tions within the areas of research, professional healtheducation, and public education were presented forthe 14 cancer-related issues. Respondents were askedto rank the recommendations of the National Steering Committee within the 3 areas for all 14 issues and torank the 3 priority cancer sites. Step 4.  For purposes of analysis, responses were re-verse coded so that issues that were ranked high hadhigher means (e.g., 1  5, 2  4, 3  3, 4  2, 5  1). An expert review panel assessed this data and synthe-sized the issues and recommendations into a finalreport. Tables 1–6 present specific recommendationsfor the top three cancer sites and the top five cancerissues for research, health professional education, andpublic education. RESULTS Of 624 survey participants, 64% were Latino, 28% non-Latino white, and 8% were Other. Participants fromacademic institutions had a 48% representation in thesurvey, and community-based organizations repre-sented 52% of survey participants. Among those fromcommunity-based organizations, the greatest propor-tion identified themselves as “directors”, and the next TABLE 1Recommendations for the Five Most Important Cancer ResearchIssues Cancer Issue Recommendation  Access to cancer screening orcareStudy differences in quality of physiciancare in different settings, such as HMOs,comparing Latinos to other race orethnic groupsTobacco use Study adolescent smoking onset andcontinuationPatient-doctor communication Study strategies to improve communication,decision-making and behavioral skillsamong Latino patientsNutrition Study the effects of dietary factors on allcancersRisk communication Study how to communicate cancer risks topatients TABLE 2Recommendations for the Three Most Important Cancer ResearchSites Cancer Site Recommendation Breast Study protective factors that contribute to lowerincidence of breast carcinomaColon and rectum Study the most effective methods for health careprofessionals to communicate risk to patientsProstate Study patient-doctor communications, especially adverseconsequences of tests TABLE 3Recommendations for the Five Most Important Cancer Issues forHealth Professional Education Cancer Issue Recommendation  Access to cancer screening orcareTrain health providers and researchers incultural competency (sensitivity to Latinoculture, norms, etc.) and interpersonal client-patient communication skillsTobacco use Educate healthcare professionals to help preventsmoking in Hispanic-Latino youthPatient-doctor communication Train more Spanish-speaking physicians, nurses,and physician assistantsNutrition Educate school district food service personnelRisk communication Improve cultural competency of health careprofessionals Latino Cancer Prevention and Control/Ramirez et al. 2211  largest group identified themselves as health care pro-viders (nurses and medical doctors). Areas of expertiseof 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% OtherLatino.Key opinion leaders ranked breast carcinoma asthe most important cancer site for cancer preventionand control within their Latino communities. Cervicalcarcinoma was ranked second, followed in order by lung, prostate, colorectal, liver, and stomach carcino-mas. Table 8 shows the rank order, determined by survery participants, of 14 surveyed cancer issues. Thetop-ranked issue was access to cancer screening andcare, followed by tobacco use. Patient–doctor com-munication was ranked significantly lower than thesetwo issues, as were the other topics. Access to cancerscreening and care was the top issue, regardless of ethnicity (Latino or non-Latino) or organizational type(academic or community center). Men ranked tobaccouse as the top issue over access to care. Recommendations In addition to gathering priority data on the mostsignificant cancer issues and primary cancer sites, the TABLE 4Recommendations for the Three Most Important Cancer Sites forHealth Professional Education Cancer Site Recommendation Breast Improve cultural competency of health careprofessionalsColon and rectum Improve patient-doctor communication concerningscreening testsProstate Improve patient-doctor communication concerningscreening tests TABLE 5Recommendations for the Five Most Important Cancer Issues forPublic Education Cancer Issue Recommendation  Access to cancer screening or care Develop partnerships with Latino-orientedcommunity-based organizationsregarding treatment and preventionTobacco use Establish partnerships with media andcorporations that support tobaccocontrol programsPatient-doctor communication N/A Nutrition Educate the public about cancer andnutritionRisk communication Develop culturally competent publiccommunication programs TABLE 6Recommendations for the Three Most Important Cancer Sites forPublic Education Cancer Site Recommendation Breast Develop programs to increase awareness, encouragepositive behaviors, and counter commonmisconceptions about breast cancerColon and rectum Educate the public about the importance of coloncancer screeningProstate Educate the public about the importance of prostatecancer screening TABLE 7Demographic Characteristics of Key Opinion Survey Participants( n   624) Characteristic Frequency Percentage Organization type Academic or cancer center 222 48.2Community-based 292 51.8GenderMale 198 32.2Female 417 67.8 Age  40 215 36.440   376 63.6Ethnicity or race White 170 27.5Black 31 5.0Native American 3 0.5 Asian-Pacific Islander 18 2.9Hispanic 397 64.1Mexican American 161 40.5Cuban American 38 9.6Puerto Rican 69 17.4Central American 27 6.8South American 58 14.6Other 44 11.1 Area of expertiseResearch and training Advocate 184 29.5Professional education 212 34.4Basic science 62 9.9Clinical science 155 24.8Behavioral and social 157 25.2Epidemiology 78 12.5Health services or outcomes research 129 20.7Other 113 18.1 AwarenessCounseling or support services 191 30.6Education 345 55.3Community outreach 321 51.4 Advocacy 226 36.2Health care service provider 181 29.0Information resource or clearing house 143 22.9Other 30 4.8 2212 CANCER June 1, 2005 / Volume 103 / Number 11  survey solicited key opinion leaders for recommenda-tions on each of these issues and cancer sites in theareas of research, professional health education, andpublic education. The primary recommendation foreach issue or site in these areas is presented in Tables1–6.  Access to cancer screening and care (number one issue)  Survey participants believed the primary research pri-ority was to ascertain differences in quality of care forLatinos in various settings and compare this informa-tion to other racial and/or ethnic groups. Respondentsfelt that professional training should be focused oncultural competency and interpersonal client–patientcommunication skills. With regard to public educa-tion, the emphasis was on developing partnerships with community-based organizations to raise aware-ness. Tobacco use  Research should be primarily focused on adolescentsmoking patterns. Similarly, it was felt that health careprofessionals should receive more education in pre-venting Latino youths from smoking. To further publiceducation, survey participants suggested working withmedia and corporations that support tobacco-controlprograms. Patient–doctor communication  Survey respondents placed greatest importance on re-searching strategies to improve communication, deci-sion-making, and behavioral skills among patients.The top professional education goal should be to trainmore Spanish-speaking providers and staff. Nutrition  More research is needed on dietary factors that affectall types of cancer, the survey participants empha-sized. The priority recommendation regarding profes-sional education focused on youth, in particular, ed-ucating school districts about nutrition in their foodservices. In addition, public awareness about cancerand nutrition should be a top priority. Risk communication  Finding the most effective means of communicating cancer risk to patients should be the major researchemphasis. As with access to screening and care, survey participants felt that improvements in cultural com-petency of providers should be emphasized in profes-sional education efforts. Similarly, respondents believedthat culturally appropriate public communication pro-grams are vital to effecting an improvement of cancerawareness in Latino–Hispanic communities. Cancer sites (breast, colorectal, prostate)  Survey participants reported that their top breast car-cinoma research recommendation was to learn moreabout the causes of lower incidence among Latinasthan other populations and to determine what protec-tive factors may be involved. Research recommenda-tions also focused on studying doctor–patient com-munications, particularly with regard to helping patients make the optimal treatment choice afterscreening, such as in the case of prostate carcinoma.Professional education priorities include improving cultural competency of health care professionals withregard to breast carcinoma and improving doctor–patient communication for colorectal and prostatecarcinoma screening. Breast carcinoma public educa-tion should focus on increasing awareness, encourag-ing positive behaviors, and addressing common mis-conceptions, according to respondents. For colorectaland prostate carcinomas, the priority recommenda-tion was to educate the public about the importanceof screening. DISCUSSION The employed research process proved effective inachieving broad participation from diverse Latinogroups. Despite regional and ethnic diversity, there was agreement on main priorities. It is not surprising that access to health services ranked at the top, asLatino populations are among those that suffer mostfrom disparities in cost and availability of care. 13 It isimportant to note that communication barriers werealso identified as part of the access problem and thatresearch and education to improve physician–patient TABLE 8Most Important Cancer Issues ( n   624) Issue Rank MeanStd.Deviation  Access to cancer screening and care 1 3.01 1.94Tobacco use 2 2.52 2.09Patient-doctor communication 3 1.48 1.76Nutrition 4 1.38 1.74Risk communication 5 1.37 1.74Physical activity and weight management 6 1.05 1.58 Alcohol 7 0.98 1.56Sexual practices 8 0.78 1.49Occupation and environment 9 0.69 1.33Quality of life 10 0.54 1.17Clinical trial or medical study participation 11 0.49 1.12Infectious agents 12 0.47 1.17Cancer survivorship 13 0.34 0.97Genetic testing and education 14 0.18 0.74 Latino Cancer Prevention and Control/Ramirez et al. 2213
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