Latin American Cancer Research Coalition
Community primary care/academic partnership model for cancer control
Article first published online: 19 SEP 2006
Copyright © 2006 American Cancer Society
Supplement: The Special Populations Networks: Achievements and Lessons Learned 2000–2005
Volume 107, Issue Supplement 8, pages 2015–2022, 15 October 2006
How to Cite
Kreling, B. A., Cañar, J., Catipon, E., Goodman, M., Pallesen, N., Pomeroy, J., Rodriguez, Y., Romagoza, J., Sheppard, V. B., Mandelblatt, J. and Huerta, E. E. (2006), Latin American Cancer Research Coalition. Cancer, 107: 2015–2022. doi: 10.1002/cncr.22145
- Issue published online: 3 OCT 2006
- Article first published online: 19 SEP 2006
- Manuscript Accepted: 24 MAY 2006
- Manuscript Revised: 4 APR 2006
- Manuscript Received: 13 JAN 2006
- NCI. Grant Number: U01-CA86114-05
- community health networks;
- community participatory research;
- cancer disparities;
- primary care
The Latin American Cancer Research Coalition (LACRC) was funded by NCI as a Special Populations Network to 1) provide training to clinic staff in cancer control and foster development of Latino faculty training, 2) conduct a needs assessment with the community clinics, 3) enhance the ability of the clinics to promote healthy lifestyles, 4) collaborate on research projects to improve use of early detection, and 5) explore partnerships to increase access to culturally competent cancer care. The LACRC developed a model for cancer control focused on community-based clinics as the focal point for in-reach and community outreach targeted to Latinos to reduce cancer disparities. This framework was designed to link the community to local hospitals and academic centers, build capacity, and promote diffusion of innovations directly into delivery systems. Eight research projects submitted by junior investigator/clinic teams have been funded by NCI. These research projects range from recruiting for clinical trials to prevention to survivorship. The LACRC has trained 6 cancer control coordinators from partner sites and educated 59 undergraduate minority student interns in aspects of cancer control research. Central to LACRC's success to date has been the creation and maintenance of an infrastructure of trusting relationships, especially those developed between clinician/investigators and individuals within the greater Latino community. Community clinics can be effective agents for cancer control among Latinos. Latinos are likely to participate in research conducted by culturally representative teams of researchers using culturally appropriate recruiting strategies. Cancer 2006. © 2006 American Cancer Society.
Latinos in the United States are from diverse economic and social classes, and have different ethnic identities, varying cultural values and perspectives, and diverse English language and health literacy levels.1–3 Although the paucity of data by ethnic origin limits the ability to design and evaluate interventions to improve outcomes, it appears that cancer is second only to cardiovascular disease as the primary cause of death among Latinos.4–8 For most leading cancer sites, Latinos seem to have lower incidence rates than average, but when they develop cancer, they are more likely to present for care at a late stage and experience inferior survival.8–17 These outcomes may be the result of multiple factors, such as low use of screening, erosion of access to services, and/or difficulty obtaining timely, high-quality, culturally competent cancer care.8, 18–25 With increases in obesity and other lifestyle changes associated with immigration and acculturation,26 Latinos in the United States may also be increasingly at risk for common cancers.4 Moreover, with the dramatic growth of the Latino population, even if lower incidence rates persist, the absolute numbers of individuals at risk for cancer will increase over the coming decades. With the growing number of Latinos in the Washington, DC, area, and the growing need for cancer control in the population, a community/academic coalition, the Latin American Cancer Research Coalition (LACRC), was formed. The purpose of this paper is to describe the model, the processes, and the successes of LACRC in its first 5 years.
Having a source of care and/or a physician recommendation are leading predictors of behavior change, regular cancer screening, and compliance with treatment, especially among vulnerable Latino and other minority groups.27–31 Despite pervasive problems in access, up to 86% of adult Latinos report having contact with a primary care physician.32–34 LACRC chose to focus on community-based clinics as the focal point for in-reach and community outreach targeted to Latinos to reduce disparities. This framework was designed to link the community to local hospitals and academic centers, build capacity, and promote diffusion of innovations directly into delivery systems. Partners included the Lombardi Comprehensive Cancer Center, the Washington Hospital Center, and 6 Spanish-serving primary care clinics. These goals were carried out by organization and community partnerships, collaborative research, and training of community members.
MATERIALS AND METHODS
Organization and Partnerships
LACRC's first funding cycle began with a systematic process of partnership building and priority setting in order to conduct community participatory research. First, LACRC developed partnerships with 3 Washington, DC, area local clinics (Spanish Catholic, La Clinica Del Pueblo, and Arlington Free Clinic) that served the target population; formed a Steering Committee; and established a local advisory board. These committees provided external oversight to the LACRC and maximized its reach to the communities served, and to the decision makers and local leaders charged with implementing programs to reduce disparities among Latinos. Second, to collect data for the needs assessment, the LACRC explored community, patient, provider, and LACRC advisors' perceptions of cancer control priorities and needs. Third, the Steering Committee reviewed data from the needs assessment and invited LACRC members to submit ideas for research pilots addressing the areas identified. Our community collaborations were incorporated in the organization by involving the community clinics from the beginning in assessing priorities and working in teams to conduct research projects. For instance, monthly meetings and the proposal submission process insured that LACRC community clinics received training in cancer control and were actively involved as true partners in the proposed research.
Based on its needs expressed by the community, the LACRC decided to concentrate on reducing breast, cervical, and colorectal cancer disparities; tobacco control; and enrollment in research studies.35, 36 The LACRC focused on cancers associated with common modifiable lifestyle factors that are also related to cardiovascular disease and diabetes—2 other major conditions with disparities among Latinos.18
Training objectives were 3-fold: 1) train community primary care staff in the principles of cancer control, especially as they applied to their clients; 2) provide university students with coursework and internship opportunities to learn about marketing cancer control to Latinos; and 3) train Latino and other researchers to focus their research on reducing disparities in Latino populations.
The Latino population of the Washington, DC, metropolitan area is predominantly of Central and South American ancestry, with the greatest numbers from El Salvador1 These groups are distinct in that 52%–64% have recently immigrated (<5 years) to the United States,37–39 compared with an average of 29% nationally. Many members of the study population lack legal residence status,1 are poorly educated (21% with <ninth grade education), and are mainly monolingual in Spanish. In addition, 32%–46% of Latinos in this region are uninsured, and at least 20% live in poverty, which is twice the national average.1, 2 Table 1 shows the demographics of patients of the partner clinics. The process of forming research collaborations with community members led to trust and community involvement. This process began with a needs assessment to assess community priorities and led to collaborations of community members with academic researchers to conduct pilot studies. Monthly meetings of all partners were used to discuss research ideas, ongoing projects, and new collaborations.
|Patient characteristic||Clinic 1(n = 248)||Clinic 2 (n = 238)||Clinic 3 (n = 216)||Clinic 4 (n = 308)||Total (n = 1010)|
|35–49||44 (18)*||60 (25)||59 (27)||76 (25)||239 (24)|
|50–64||158 (64)||109 (46)||111 (52)||157 (52)||535 (53)|
|≥65||46 (18)||68 (29)||45 (21)||71 (23)||230 (23)|
|Male||108 (44)||107 (45)||37 (17)||145 (48)||397 (40)|
|Female||140 (56)||130 (55)||179 (83)||159 (52)||608 (60)|
|Country of Origin|
|El Salvador||126 (51)||101 (42)||96 (44)||147 (48)||470 (47)|
|Perú||21 (9)||23 (10)||43 (20)||13 (4)||100 (10)|
|Guatemala||15 (6)||19 (8)||28 (13)||20 (7)||82 (8)|
|Bolivia||8 (3)||10 (4)||15 (7)||17 (5)||50 (5)|
|Mexico||8 (3)||14 (6)||13 (6)||11 (4)||46 (4)|
|Country other||49 (20)||49 (21)||9 (4.2)||56 (18)||163 (16)|
|Nicaragua||11 (4)||7 (3)||4 (2)||17 (5)||39 (4)|
|Cuba||1 (0.4)||2 (1)||3 (1.4)||2 (0.7)||8 (0.8)|
|Costa Rica||1 (0.4)||0 (0)||3 (1.4)||1 (0.3)||5 (0.5)|
|Puerto Rico||0 (0)||3 (1)||2 (1)||0 (0)||5 (0.5)|
|Dominican Republic||8 (3.2)||10 (4)||0 (0)||24 (8)||42 (4.2)|
|English||2 (1)||6 (2)||4 (2)||1 (0.3)||13 (1)|
|Spanish||242 (97)||228 (96)||208 (96)||302 (98)||980 (97)|
|Not indicated in chart||4 (2)||4 (2)||4 (2)||5 (1.7)||17 (2)|
|No formal education||35 (14)||26 (11)||3 (1)||27 (9)||91 (9)|
|1st to 8th grade||144 (58)||117 (49)||0 (0)||136 (44)||397 (39)|
|9th to 11th grade||11 (5)||15 (6)||0 (0)||27 (9)||53 (5)|
|High school graduate but no further training||29 (12)||36 (15)||1 (0.5)||30 (10)||96 (10)|
|More than high school||23 (9)||17 (7)||1 (0.5)||26 (8)||67 (7)|
|Not indicated in chart||6 (2)||27 (12)||211 (98)||62 (20)||306 (30)|
|Full-time||23 (9)||12 (5)||59 (27)||80 (26)||174 (17)|
|Part-time||13 (5)||10 (4)||44 (20)||86 (28)||153 (15)|
|Unemployed||40 (16)||44 (19)||96 (45)||78 (25)||258 (26)|
|Retired/student||5 (2)||3 (1)||4 (2)||28 (9)||40 (4)|
|Not indicated in chart||167 (68)||169 (71)||13 (6)||36 (12)||385 (38)|
|<8,000||57 (23)||43 (18)||80 (37)||80 (26)||260 (26)|
|8,000–10,000||23 (9)||0 (0)||34 (16)||35 (12)||92 (9)|
|10,000–20,000||63 (26)||4 (2)||77 (35)||25 (8)||169 (17)|
|>20,000||5 (2)||2 (1)||17 (8)||7 (2)||31 (3)|
|Not indicated in chart||100 (40)||189 (79)||8 (4)||161 (52)||458 (45)|
|Married/living as married||123 (49)||135 (56)||71 (33)||137 (45)||466 (46)|
|Other||121 (49)||102 (43)||67 (31)||100 (32)||390 (39)|
|Not indicated in chart||4 (2)||1 (1)||78 (36)||71 (23)||154 (15)|
|1 person||68 (28)||25 (10)||57 (26)||46 (15)||196 (19)|
|2 persons||64 (26)||37 (16)||56 (26)||40 (13)||197 (20)|
|3 or more persons||63 (25)||18 (8)||95 (44)||132 (43)||308 (30)|
|Not indicated in chart||53 (21)||158 (66)||8 (4)||90 (29)||309 (31)|
To serve this unique and largely understudied Latino population, the LACRC began by examining cancer control priorities of patients (in focus groups) from the communities served by its partner clinics and compared these priorities to concerns of clinic providers. The most frequently mentioned theme among patients was lack of knowledge about cancer screening, particularly about colorectal cancer screening. Improving colorectal cancer screening was also among the top priorities of the clinicians at the partner clinics, in in-depth interviews. Other areas identified by both groups included improving access to delivery of services for screening, especially mammography and colonoscopy; follow-up care; tobacco control; and ways to improve communication about research studies and cancer risks.36 These priority areas were used by the Steering Committee to prioritize research activities.
Preliminary efforts to integrate evidence-based ‘best practices’ into LACRC clinic-based research included conducting a review of primary-care–based breast, cervical, or colorectal cancer screening interventions targeting Latinos.40 Of 14 studies, only 4 included at least 50% Latino participants, limiting the ability to draw conclusions. The following sections summarize LACRC research designed to fill this and other key knowledge gaps by phase of cancer control.
Research and Recruitment
During the 5 years of the project, a total of 10 pilot studies were submitted by junior-investigator–community-clinic teams for funding, 8 of which were funded. One minority faculty member leveraged her work to obtain career development support. A total of 14 manuscripts are in final preparation, are under review, or have already been approved for publication.8, 9, 40–45 Results from these studies have been presented to the collaborating clinic boards.
Since there is a paucity of research on successful approaches to recruiting and retaining urban Central and South American Latinos in cancer control research,46–49 early LACRC efforts focused on developing a model for recruiting Latinos. Bilingual, bicultural teams recruited participants from grocery stores, beauty salons, churches, health fairs, and partner clinics using themes that drew on Latino ethnic values. Materials were written in fifth-grade level Spanish. Daily radio programs, broadcast by a Latino radio station, were used to reinforce recruitment messages. This approach was extremely productive, with participation rates greater than 90%.43 The studies are highlighted in the following paragraphs.
Chemoprevention of breast cancer
This study was designed to evaluate factors associated with intent of Latinas (n = 450) receiving care in 3 LACRC community clinics to participate in the Study of Tamoxifen and Raloxifene (STAR Trial). LACRC also pilot tested a brief provider intervention designed to increase willingness to enroll in the STAR Trial. Findings indicated that enrollment in the trial was feasible within these busy clinics, in which 96% of the women contacted agreed to participate in the survey and 79% agreed to participate in a clinical trial, if they were eligible. Baseline breast cancer knowledge was fairly high, but understanding about clinical trials was lower. Women reported high interest in participating in the STAR Trial if eligible, although interest declined with increasing discussion of side effects. Unfortunately, the brief educational intervention was only marginally effective in increasing intention to enroll.42
Another study examined rates of smoking, smoking history, interest in stopping smoking, and access to interventions among adults in 1 LACRC community clinic. The study identified low smoking prevalence rates among 762 patients (14% in females; 17% in males). Spanish-language interviews conducted with 140 current smokers and 157 former and nonsmokers found that current smokers were more likely to report current symptoms of depression (OR = 1.98, P < .01) and current alcohol use (OR = 4.32, P < .01) than were former or nonsmokers. Sixty percent of participants reported having a family member who smoked, and half of those reported interest in wanting to help their family member stop smoking. Among smokers, 82% reported interest in stopping smoking and over 80% reported willingness to provide samples of saliva, urine, and blood. Feedback from clinic providers indicated that successful tobacco cessation efforts would require Spanish-language self-help materials, outreach to smokers, and access to medications and treatment programs.50
In a developmental project, LACRC assessed different measures of Latinas' perceptions of breast cancer risk and examined associations between risk perceptions and self-reported mammography use among 450 recently immigrated women aged 35–75 years (recruited as part of the STAR Trial study). These women had fairly high risk perceptions, with about 20% perceiving themselves as likely to get breast cancer, whereas only 5.3% would have been considered ‘high-risk’ using the Gail model.51 Preliminary data demonstrated that concerns and perceived risk about cancer were associated with increased mammography use and intent to participate in clinical trials.44
Since its partners indicated that trust was an issue for their clients, the LACRC also conducted a study of association between trust in providers and mammography use (n = 170). Women who were regular users of LACRC clinics had significantly more trust in their primary care providers than women recruited from community settings (e.g., hair salons, churches, etc.). Trust and perceptions of discrimination based on ethnicity were not associated with screening after considering primary care relationships (having a source of care; provider recommendation) and insurance coverage.43
Since colorectal screening was a high priority for providers and patients, the LACRC conducted 2 pilots in this area. The first study used mixed qualitative and quantitative research methods to examine patient (n = 373) and provider (n = 180) barriers to the utilization of the fecal occult blood test (FOBT) among Latinos seeking services at LACRC safety net sites.41 The data revealed that many channels of information about colorectal cancer were reported by Latinos; the most frequently named were health fairs, churches, network clinics, and Dr. Huerta's radio and TV shows. Computers and the Internet were only rarely cited as a source of information. Key predisposing barriers included lack of knowledge (e.g., men often confused colorectal and prostate cancer screening), beliefs that one could not have cancer without symptoms, fatalistic attitudes, being ‘used to suffering,’ and ‘machismo’ among men. Clinics reported lack of funds for FOBT kits or follow-up care and long waits for appointments. Perceived facilitators of screening included convenience of the primary care site, provider recommendation, and having Spanish-speaking providers explaining the purpose and procedures. For providers, major disincentives to recommending screening were the difficulty of focusing on prevention in a population with many competing health needs and lack of access to free or low-cost colonoscopies for patients with positive FOBTs.45
In the second pilot addressing colorectal cancer screening, the LACRC joined efforts with the NCI Cancer Information Service (CIS) to develop media messages on the need for screening. Messages are being pilot tested in a series of radio novelas, and reinforced by community clinics.
Given the resource constraints of the public health care system in the region, the LACRC is also exploring alternative models for screening delivery. One model that has been developed by Huerta and colleagues52 for reaching minority populations is the culturally tailored cancer education and screening centers. One such center, the ‘Preventorium,’ provides comprehensive cancer risk assessment and screening for Latinos and helps to navigate patients from screening to follow-up services. Since its inception in 1994, more than 12,000 men and women have been screened (90% Latino, 60% <high school education, and 60% uninsured).8 One of the key features in the success of this model has been the interpersonal connection between Dr. Huerta's promotion of cancer control through radio shows and the delivery of services at the Preventorium, where he is the Director.
A unique feature of the LACRC has been access to cancer patients and their families through partner cancer centers. Relationships have also been developed with cancer advocates and community oncologists and surgeons serving large numbers of Latinos. Through these partnerships, 2 pilot projects have been developed that focused on the treatment phase of cancer control. In the first, the LACRC partnered with a local breast cancer advocacy group (Nueva Vida) to study cultural beliefs about chemotherapy use among Latina breast cancer patients. In the second, the LACRC is working with Nueva Vida and the CIS to develop a peer navigator-training program designed to help Latino women successfully navigate through the health care system once diagnosed with cancer.
One pilot study, currently in progress, aims to identify unmet medical, social support, and practical needs of Latina breast cancer survivors and their close family and friends.
To assess awareness and use of cancer screening and elicitation of smoking history in the clinics, the LACRC conducted a random, cross-sectional review of medical charts in 2001 (pre-LACRC programs) and again in 2004 (after 4.5 years of activity).3 Results showed that at the start of the project, age-appropriate screening rates noted in charts were low for all cancer sites. In about 40% of charts, there was no mention of either recommendation or performance of screening tests (breast, cervical, and colorectal cancers) and 75% of charts had no notation of smoking status (Table 2). By 2004, there were increases in mammography and Pap tests, and more notation of test status and smoking status. Unfortunately, documented colorectal cancer screening rates remained low.
|Baseline rates, 2001 (n = 1010)||Rates, 2004 (n = 974)|
|Ever had mammogram|
|Yes||343 (57)†||422 (72)|
|No||14 (2)||67 (11)|
|Not documented in chart‡||251 (41)||95 (16)|
|Ever had Pap|
|Yes||426 (70)||489 (82)|
|No||4 (1)||17 (3)|
|Not documented in chart||178 (29)||89 (15)|
|Ever had FOBT|
|Yes||135 (18)||83 (17)|
|No||25 (3)||34 (28)|
|Not documented in chart||605 (79)||65 (55)|
|Ever had CRC screening§|
|Not documented in chart||729 (95)||—|
|Ever had sigmoidoscopy§|
|Not documented in chart||—||620 (66)|
|Ever had colonoscopy|
|Not documented in chart||—||583 (62)|
|No, never smoked||187 (18)||51 (8.31)|
|No, former smoker||29 (3)||486 (79.15)|
|Yes, current smoker||67 (7)||77 (12.54)|
|Not documented in chart||727 (72)||NA|
|Provider discussed smoking?|
|Yes||18 (2)||99 (10.51)|
|No||240 (24)||529 (56.16)|
|Not documented in chart||752 (74)||314 (33.33)|
In its first 4 years, the LACRC trained a cancer control coordinator in each of its 6 community clinic partner sites, supported submission of 2 career development awards, supported 8 junior faculty in obtaining pilot grants, prepared 2 project staff to obtain admission into doctoral programs, and educated 59 undergraduate minority student interns and community staff in social marketing for cancer control in Latino populations. Importantly, each pilot project submitted to NCI through the LACRC was a collaboration of experienced researchers with Latino clinic partners, providing direct training in research design, proposal writing, and implementation and dissemination of research projects.
Three key lessons have been learned in the first 5-year cycle of the LACRC. First, trusted community clinics can be influential in building trust and participation in clinical research. Second, interactions between community partners, advocacy organizations, and academic researchers can enhance a researcher's cultural competence and help translate best practices into resource-poor health care settings. Finally, in evaluating the impact of a community network, the LACRC has found that population-based data are largely unavailable or unreliable.
The LACRC's success in partnering with community primary care clinics to reach at-risk Latinos underscores the central role of medical authorities in this population. The work of this project, and that of others,9, 53–55 demonstrates that health-related media messages delivered via radio, by a trusted medical authority, can reinforce messages delivered in the clinic setting, reinforcing cancer control messages and providing a model for increasing participation in clinical research. Clinic-based recruitment can also successfully recruit Latino males, a traditionally hard-to-reach group. As suggested by others,47, 55 the LACRC has found that gender, ethnic, and language matching of research staff to subjects is important in approaching Latino subjects for study participation. Overall, the creation and maintenance of an infrastructure of trusting community relationships has been central to the LACRC's success to date.
Finally, as the LACRC began to develop research projects, it became apparent that efforts to design and plan interventions were limited by the availability of reliable, valid, and representative data on cancer-related behaviors for the subgroup of recently immigrated Central and South Americans. Current methods of sampling Latinos in health surveys have been limited by poor response rates; insufficient numbers for subgroup analyses or stable point prevalence rates; lack of tailoring for language, cultural, and literacy issues prevalent in Latinos; healthy volunteer effects; poor telephone coverage; and social desirability biases.49, 56 In addition, local tumor registries are just beginning to apply algorithms to identify Latino ethnicity, and so it is not yet possible to evaluate trends in incidence and mortality. Improving the data infrastructure in this community is a key priority for the next 5 years.4–7
The LACRC has been a catalyst for the coalescence of experienced, geographically proximate, multicultural, bilingual, interdisciplinary scientists, clinicians, and community organizations into a cohesive coalition focused on the cancer control needs of Latinos of Central and South American descent. The LACRC provides a strong infrastructure for collaborative interactions, builds on longstanding community relationships, stimulates the development of new training and education models, maximizes cross-fertilization of ideas, provides a forum for the community voice, and has stimulated new research on cancer disparities in a geographically defined and understudied population of Latinos. This community primary care model to reduce cancer disparities has the potential to be replicated in other U.S. urban Latino communities.
Building on its success to date, the LACRC's future plans are to expand its reach from a local to a regional community network including all counties in the 3-state Greater Metropolitan DC region (DC, Maryland, Virginia) with ≥100,000 Latinos per county. The intent is to provide new models and paradigms of cancer control for application to underserved minority populations with limited resources and at risk for poor cancer outcomes through expanded community health networks and systems. The structure of the LACRC, with its strong links between community-based populations, clinics serving these populations, and academic medical and cancer centers, will ideally provide a platform for bridging the gaps between research discovery and health care delivery systems, and developing, testing, evaluating, and disseminating culturally competent interventions across the spectrum of cancer control.
We thank Dr. Alan Andreason for developing and teaching Social Marketing to Latinos course; Dr. Ann O'Malley, Mariano Kanamori, and Laura Pallandre for earlier contributions to the LACRC; Trina McClendon for manuscript preparation; and the patients, family, and community members who contributed to this study.
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