Legacy of the Pacific Islander cancer control network

Authors


Abstract

The groundwork for the Pacific Islander cancer control network (PICCN) began in the early 1990s with a study of the cancer control needs of American Samoans. The necessity for similar studies among other Pacific Islander populations led to the development of PICCN. The project's principal objectives were to increase cancer awareness and to enhance cancer control research among American Samoans, Tongans, and Chamorros. PICCN was organized around a steering committee and 6 community advisory boards, 2 from each of the targeted populations. Membership included community leaders, cancer control experts, and various academic and technical organizations involved with cancer control. Through this infrastructure, the investigators developed new culturally sensitive cancer education materials and distributed them in a culturally appropriate manner. They also initiated a cancer control research training program, educated Pacific Islander students in this field, and conducted pilot research projects. PICCN conducted nearly 200 cancer awareness activities in its 6 study sites and developed cancer educational materials on prostate, colorectal, lung, breast, and cervical cancer and tobacco control in the Samoan, Tongan, and Chamorro languages. PICCN trained 9 students who conducted 7 pilot research projects designed to answer important questions regarding the cancer control needs of Pacific Islanders and to inform interventions targeting those needs. The legacy of PICCN lies in its advancement of improving cancer control among Pacific Islanders and setting the stage for interventions that will help to eliminate cancer-related health disparities. Cancer 2006. © 2006 American Cancer Society.

The Pacific Islander cancer control network (PICCN) was established to address the cancer control needs of American Samoans, Tongans, and Chamorros, populations that make up 3 of the 4 largest groups of Pacific Islanders in the United States—only Native Hawaiians are more numerous.1 According to the 2000 U.S. Census, there were 91,029 American Samoans, 58,240 Guamanians or Chamorros, 27,713 Tongans, and 140,652 Native Hawaiians living on the U.S. mainland and Hawaii. An additional 57,291 Samoans resided in the U.S. Territory of American Samoa, and 154,805 Guamanians or Chamorros lived in Guam. Detailed descriptions of the targeted populations, methodologies employed by PICCN, and interim results appear elsewhere.2, 3 As the 5-year project comes to a close, this article describes the circumstances that led to the development of PICCN and provides an overview of the methodology, a summary of the final results, a discussion of lessons learned, and some thoughts about the project's legacy.

The groundwork for PICCN began in the early 1990s with a study of the cancer control needs of American Samoans. At that time, there was little published information about cancer incidence rates, knowledge and attitudes about cancer, or use of cancer preventive services in this population. Using cancer registry data from Los Angeles and Hawaii, the investigators compiled and published proportional cancer incidence rates for American Samoans.4, 5 They found that the most common cancers were similar to those of non-Latino whites. For example, lung cancer and breast cancer were the most often diagnosed cancers among men and women, respectively. However, they also determined that other cancers, such as cervical cancer, had higher proportional incidence rates. Additional analysis revealed that diagnosis of many cancers was made at younger ages and at more advanced stages among American Samoans than among a non-Latino white comparison group.5 The investigators also conducted focus groups and a large survey with American Samoans in Los Angeles, Hawaii, and American Samoa. These focus groups documented the fact that relatively little information about cancer was available, particularly in the Samoan language, and that the participants were anxious to learn more about cancer.6 Survey findings revealed beliefs about cancer that did not correspond with biomedical information about the disease7 and low use of cancer prevention and early detection tests such as mammography for breast cancer8 and Pap smears for cervical cancer.9

As the investigators conducted the studies among American Samoans, it became clear that similar efforts were needed in other Pacific Islander populations. Other than some excellent work among native Hawaiians,10, 11 little research was being conducted to evaluate the cancer control needs of Pacific Islanders. Therefore, when the National Cancer Institute (NCI) requested proposals for special populations networks (SPNs) that would address cancer awareness, research, and training among ethnic/racial minority groups in the United States, the investigators proposed the PICCN.

The overarching goal of PICCN was to help eliminate cancer health disparities, an ambitious goal set forth in the Healthy People 2010 framework for disease prevention.12 The objectives were similar to those of the other SPNs: to develop an infrastructure to increase cancer awareness, enhance training of minority investigators in cancer control research, and facilitate cancer research among the populations. However, PICCN has faced some unique challenges in achieving these objectives. First, the primary language of many Samoans, Tongans, and Chamorros is not English. Thus, it was necessary to develop culturally sensitive cancer awareness materials in the Samoan, Tongan, and Chamorro languages, sometimes necessitating the coining of new words for cancer-related terms. Second, few members of these populations have advanced degrees or backgrounds in biomedical research. Therefore, it was essential to create training programs geared to students at less advanced educational levels than those in some other SPNs. Third, very little was known about the cancer control needs of these populations. For that reason, it was necessary to develop a research agenda that included basic issues such as cancer incidence rates, knowledge and attitudes about cancer, and use of cancer prevention and early detection services.

MATERIALS AND METHODS

Infrastructure

PICCN provided an infrastructure for collaboration between the University of California, Irvine (UCI); the UCI Chao Family Comprehensive Cancer Center; various academic and technical organizations, and community-based organizations (CBOs) in areas where large numbers of Pacific Islanders live.2, 3 As shown in Figure 1, the Steering Committee, which met yearly at UCI, was responsible for overall guidance of the project. Membership included the PICCN principal investigator (PI) and co-principal investigator (Co-PI), the NCI project officer, the Chairs of 6 advisory boards (2 from each of the ethnic groups), and other faculty members from UCI. Representatives from the cancer information service (CIS) also attended most meetings. The Pacific Islander community committee, which met on the day before the Steering Committee, provided the advisory boards' chairs with the opportunity to share information about progress in their regions. The advisory boards' membership included the chair, other Pacific Islander community members and individuals from academic medical centers, NCI, NCI-designated cancer centers, the CIS, and other organizations that focus on cancer research and education.3 The boards met regularly in their regions. The PI and Co-PI met with each board in their regions yearly. It was through this infrastructure that PICCN addressed the goals of improving cancer awareness, training native investigators, and conducting research.

Figure 1.

Organization of the Pacific Islander cancer control network.

Cancer Awareness Activities

The investigators faced a number of challenges in improving cancer awareness. Few education materials that specifically addressed the cancer control needs of Samoans, Tongans, and Chamorros existed prior to this project. Since programs could not be developed for all cancers, it was necessary to identify those that the communities felt were most important. Furthermore, the Samoan, Tongan, and Chamorro languages lacked words for some of the cancer-related terminology needed in the educational materials. Thus, it was necessary to coin words in these languages. Finally, it was important to conduct the educational programs in a culturally sensitive manner and in appropriate venues. Detailed knowledge of the cultures was vital in this endeavor.

The advisory boards were crucial to addressing each of the challenges.3 Using the expertise of the community and academic membership, they identified the cancers of most concern for their communities and the best approaches and venues for increasing awareness about them. They also took primary responsibility for developing new educational materials. They worked closely with organizations such as the CIS, American Cancer Society (ACS), Tell a Friend, and State/Territory Breast and Cervical Cancer Control Programs to coordinate activities.

The process for developing new cancer education materials began with a review of brochures in English that had been developed by NCI or ACS and assessing their appropriateness for their populations. Certified translators from the communities then translated the materials, after which they were presented to focus groups for evaluation of cultural sensitivity and readability. It was sometimes necessary to coin new words in these languages, in which case the investigators consulted language experts in the Territories for advice. The Steering Committee was responsible for approval of the final drafts.

The effectiveness of cancer awareness activities was measured primarily through process evaluation. Activity coordinators were responsible for documenting the type of cancer that was addressed, the setting of the event, the number of attendees, and the sort and number of cancer awareness materials distributed.

Training and Research Activities

Because few Pacific Islanders had expertise in cancer control research, PICCN endeavored to develop a pipeline for students with potential careers in this field. It was necessary to identify potential students and to initiate a program that would begin to teach them about cancer prevention and control. The advisory boards selected the candidates for participation using specific criteria, including having at least a bachelor's degree, having a background in the sciences, and being committed to working in the field of cancer control research in the community. The course, called the UCI Cancer Control Academy, was based initially on the successful model for training minority investigators developed at the University of Oregon.13 However, during the early years of the SPN grant, the coursework was modified to focus specifically on developing pilot research projects to be submitted to NCI for funding consideration.

The Academy was conducted during 3 weeks each summer3 (Table 1). During the first week, coursework focused on information necessary for the background and significance section of the grant application, including discussions about cancer among Pacific Islanders and literature searches. The second week focused on methodology, and the third week focused on grant-writing skills. The students also had nightly reading assignments from publications on research methodology and grant writing. Through this curriculum, they gained insight into the field of cancer control research and how such research could benefit their communities.

Table 1. Cancer Control Academy Curriculum
TimeMondayTuesdayWednesdayThursdayFriday
Week one
 8:30 am–10:15 amOrientation/course objectiveCancer in Pacific IslandersCultural considerations in Cancer ResearchClinical trialsInstitutional review board
 10:30 am–12:15 pmPICCN projectCancer epidemiologyCultural considerations in cancer researchTour of UCI cancer centerLibrary searches
 12:15 pm–1:15 pmLunchLunchLunchLunchLunch
 1:15 pm–3:00 pmOrientationCommunity collaborationNutritional epidemiologyDiscussion, target library searchNCI activities and resources
 3:15 pm–5:00 pmCommunity collaboration—National levelCommunity health assessmentLibrary searchesResearch projects discussionDeveloping materials
Week two
 8:30 am–10:15 amCancer control study designsMethods overviewEthnographic researchAmerican cancer societyInstitutional review board (IRB)
 10:30 am–12:15 pmIRB tutorialFocus groups introductionQualitative analysisIrvine officePilot projects
 12:15 pm–1:15 pmLunchLunchLunchLunchLunch
 1:15 pm–3:00 pmCancer epidemiologyFocus groups applicationSurvey data collectionPilot projects research questionGrant writing
 3:15 pm–5:00 pmTobacco control projectsPilot discussionQuantitative analysis, basicPilot projects specific aimsGrant writing
Week three
 8:30 am–10:15 amGrant writing methods sectionData analysis practiceProject manager, successes and pitfallsGrant writingTrainee presentation of grants
 10:30 am–12:15 pmGrant WritingData AnalysisBudgetTimelinesGrant WritingAssessment Wrap-up and Feedback
 12:15 pm–1:15 pmLunchLunchLunchLunchLunch
 1:15 pm–3:00 pmGrant WritingGrant WritingGrant WritingMock grant review 
 3:15 pm–5:00 pmLeadership skills perspectives/consensus buildingLeadership skills critical thinkingGrant writingMock grant review 
Supplemental training
 9:00 am–10:15 amOrientation/how to write and publish a scientific paperQuantitative data analysis––basic statisticsQualitative data analysis––focus groupsQuantitative data analysis introduction to SPSSDraft manuscript review
 10:30 am–12:15 pmPresentation of pilot projectsQuantitative data analysis––basic statisticsQualitative data analysis––focus groupsQuantitative data analysis introduction to SPSSDraft manuscript review
 12:15 pm–1:15 pmLunchLunchLunchLunchLunch
 1:15 pm–5:00 pmQualitative data analysis––ethnographyReading assignments and manuscript writingReading assignments and manuscript writingReading assignments and manuscript writing 

The students, in consultation with their advisory boards, chose the topics for the pilot project proposals.3 One or more UCI faculty members served as student mentors. As described later, project topics varied based to some extent on the stage of research development in each Pacific Islander group. By the end of the training course, the students had prepared a draft pilot project proposal. They then worked with faculty members during the next 3 months (the Academy occurred in June and the NCI pilot project submission deadline was October 1) to finalize the applications for submission to NCI.

As the projects progressed, PICCN leadership recognized the potential benefits of providing additional “just in time” training to the funded pilot project investigators. Therefore, they conducted an additional 1-week course during the fifth year that focused on data analysis and manuscript writing (Table 1). The instructors drew upon the students' databases for examples that were incorporated into the training. By the end of the week, students were expected to prepare a draft manuscript from which a scientific paper would be developed and submitted for publication.

RESULTS

Cancer Awareness Activities

PICCN conducted nearly 200 cancer educational programs in the three Pacific Islander groups. As shown in Figure 2, the most frequent topics were breast and cervical cancer, prostate cancer, tobacco control, and cancer statistics specific to the populations. Other issues addressed less frequently were cancer survivorship, clinical trials, and nutrition (data not shown). All 3 groups conducted numerous programs on breast and cervical cancer and cancer statistics. In addition, the American Samoans, particularly in Territory, focused on tobacco control, while the Tongan groups often addressed prostate cancer. The Chamorro groups put particular emphasis on general cancer prevention. The groups differed regarding the types of educational activities that they conducted.3 American Samoans in the Territory relied largely on mass media campaigns using radio, television, and newspapers while their counterparts on the mainland presented at churches and health fairs. The Tongan groups often presented at churches and health fairs while the Chamorros used health fairs and fiesta events to provide the educational programs. When possible, the programs were conducted in collaboration with national organizations such as the ACS and CIS.

Figure 2.

Number of cancer awareness activities by ethnic group. There were approximately 200 activities. Only the more frequently addressed topics appear in the figure.

The Network developed cancer awareness brochures in the Samoan, Tongan, and Chamorro languages regarding prostate, colorectal, lung, breast, and cervical cancer and tobacco control. As part of a pilot research project, investigators also evaluated the appropriateness of NCI clinical trials educational brochures for Pacific Islanders.

Training and Research Activities

Cancer control academy

The Academy trained 3 students each year, 1 from each of the targeted Pacific Islander groups—American Samoan, Tongan, and Chamorro.3 Of the 9 students, 5 were women and 4 were men. All of these graduates have returned to their communities and most plan to pursue careers related to cancer control. Two students have enrolled in master's programs. These students and 1 additional student plan to apply for doctoral programs with a focus on cancer research. Two others already are in positions to carry out cancer education/research.

As part of the training, each student developed a pilot research project that served as an entry point into the field of cancer control research. The trainees were assisted by a senior faculty mentor who was responsible for supervising the development of the project for submission to NCI for funding consideration. For those projects that received funding, the mentors helped to train other research personnel (such as interviewers), assisted with the IRB approval process, participated in the conduct of the study as necessary, monitored study progress, co-authored abstracts and manuscripts.

Pilot research projects

NCI funded 6 PICCN pilot research projects and the Chao Family Comprehensive Cancer Center funded 1 additional project. As part of the projects, the investigators developed surveys on knowledge, attitudes, and preventive practices regarding cancer in general for Chamorros and Tongans; breast cancer and social support for breast cancer survivors for Chamorros; and clinical trials for Samoans, Tongans, and Chamorros. The surveys combined inquiries from validated questionnaires, such as the National Health Interview Survey, with those developed by the investigators based on focus group findings and their knowledge of the populations.

The studies of Tongans focused on this population's cancer-related knowledge, attitudes, and use of cancer prevention services. Likewise, the Chamorro studies addressed these same issues but with a particular focus on breast cancer including the first study, to our knowledge, to evaluate cancer support options for breast cancer survivors on Guam. Because the state of cancer control research is somewhat more advanced among American Samoans, the studies regarding this group were more targeted. Data collection has been completed for all of the pilot projects and data analysis is ongoing. Brief descriptions of the 7 studies appear below.

Predictors of screening exam use among Chamorros in Guam.

This is the first in-depth study to evaluate cancer-related knowledge, attitudes, and preventive practices of Chamorros residing in Guam. The investigators conducted a cross-sectional face-to-face survey of 266 individuals (118 men and 148 women) over the age of 50 years recruited through nonprobability purposive sampling from 10 villages representing the major geographic regions of the island. The questionnaire inquired about cancer in general and about breast and prostate cancer specifically. Preliminary analysis revealed relatively high levels of knowledge about cancer risk factors for Chamorro men and women in Guam. Self-reported breast cancer screening rates were greater than expected but prostate cancer screening rates were low. The findings provide important information for targeted cancer awareness activities in this population.

Fa'aSamoa and cancer screening.

Fa'aSamoa is the traditional Samoan way of life that is based upon respect for each other and the community and upon a healthy lifestyle.14 This study used focus group methodology to evaluate the influence of fa'aSamoa on beliefs about and use of prostate and colorectal cancer screening among Samoan chiefs, pastors, and male community members in Los Angeles and American Samoa. Each of the 6 focus groups consisted of approximately 10 men from each set of individuals mentioned earlier. Qualitative content analysis was used to evaluate the data, and based on the findings, a cancer control intervention will be developed that focuses on a return to the traditional healthy lifestyle of fa'aSamoa.

Family history and cancer beliefs among American Samoans.

While previous research indicates that many Samoans believe that cancer did not exist in their community until contact with palangis (whites),6 the majority of Samoans believe that family history is an important risk factor for many cancers.7 Within this context, this study used ethnographic interviews with approximately 30 Samoan women to evaluate what family history means to American Samoans in terms of its role as a risk factor for cancer. The investigators used qualitative content analysis and cultural consensus analysis to evaluate the data. The findings will help the research team better understand how Samoans think about cancer and how this information may be used in cancer awareness activities.

Cultural meaning and cancer among Tongans.

Little is known about the cancer control needs of Tongans. This study used anthropologic methods to collect qualitative and quantitative data about knowledge, attitudes, and preventive practices in this population. The investigators conducted face-to-face interviews with 60 Tongans (30 men and women from San Mateo, California, and the same numbers from Salt Lake City, Utah) regarding cancer in general and specifically those cancers for which effective screening exams exist—breast and cervix for women, prostate for men, and colorectal for both men and women. This baseline information is imperative to understanding the social relevance of cancer in the community and to developing points of comparison with other Pacific Islander populations.

Breast cancer among Chamorro women in San Diego.

Limited information exists about the breast cancer control needs of Chamorro women. This study used focus group methodology and a cross-sectional, quantitative survey design to assess knowledge, attitudes, and preventive practices related to breast cancer among 100 Chamorro women over the age of 40 years living in San Diego, California. In addition, the study is exploring the hypothesis that women associated with the military—who represent a significant group within this population—will have higher self-reported mammography screening rates because of greater access to care compared with other Chamorro women. Qualitative content analysis was used for focus groups, with univariate and bivariate analyses of the quantitative data. This is the first in-depth investigation of these issues among Chamorros.

Social support use among Chamorros with breast cancer.

Breast cancer is the leading cause of death for Chamorro women in Guam between the ages of 20–59 years. To date, no study has characterized the breast cancer survivorship experience in Guam, particularly related to the important construct of social support after cancer. The investigators used ethnographic methods to examine the use of informal and formal resources by breast cancer survivors during the treatment and healing process. Twenty-five breast cancer survivors received an ethnographic interview in which a genogram, ecomap, social network map, and network grid were constructed. Respondents also completed standardized social support and quality-of-life questionnaires. Project findings will add to existing knowledge of informal and formal social support resources and influence support program planning and future research for breast cancer survivors and their family members in Guam.

Evaluation of clinical trials education materials.

Culturally sensitive and linguistically appropriate cancer education materials are vital to improve cancer prevention, control, and treatment for special populations. In this pilot project, the investigators used focus group methodology to evaluate clinical trials educational materials developed by NCI. The overall objective of the study was to determine how materials might be improved to more effectively communicate with and educate the Pacific Islander community about clinical trials. The investigators conducted 8 focus groups with Chamorro, Samoan, and Tongan men and women to assess the cultural sensitivity and appropriateness of current NCI clinical trials educational literature. Information from the study will provide preliminary data for a larger research effort to develop, implement, and evaluate culturally sensitive print materials on major cancer types within the context of cancer prevention, genetics, and treatment trials.

Results of these 7 studies will make important contributions to knowledge about the cancer control needs of Pacific Islanders and set the stage for intervention projects to address those needs.

DISCUSSION

The Pacific Islander Cancer Control Network has accomplished much during the past 5 years. The PICCN experience taught its leaders invaluable lessons. Most importantly, it proved that Pacific Islander communities and university leadership could collaborate effectively to achieve important cancer control goals. Some of the approaches used to develop the program's activities and lessons learned by PICCN leaders may be useful to others devoted to improving cancer control in special populations.

Community involvement in all aspects of the project was the key to success. Community and university leaders strove to maintain trust and create an equal partnership. Community participation assured that cancer awareness materials and activities were culturally appropriate, including the use of Pacific Islander faces on brochures and the conduct of activities in proper locations such as churches and health fairs. It also helped ensure that the students who were selected to participate in the Cancer Control Academy were dedicated to the task and that the research topics were appropriate for the populations. Community involvement also guarantees that the findings from the research will be presented to the communities when the work is completed.

The methods used to develop cancer awareness booklets and brochures may also be of interest to other cancer control specialists. The complexities of designing, translating (coining new words when necessary), and evaluating these new educational materials were challenging; however, the end results (new materials in Samoan, Tongan, and Chamorro languages) were well worth the effort. Consultations with the CIS and ACS were particularly helpful in these endeavors.

PICCN leaders take particular pride in the cancer control research training program. The program's success is the result of the enthusiasm and hard work of both the students and the faculty and of the coursework itself. The resulting pilot research projects will provide important information for improving cancer control in these populations. Clearly, students cannot learn in 4 weeks everything they need to know to become cancer control investigators. However, if some of the students pursue careers in this field, as currently planned, the program could potentially impact research among Pacific Islanders for years to come.

The project also provided a number of challenges. For example, despite the desire for trust and an equal partnership, both the community and the university leadership felt that these expectations were not always met. The intermittent lack of trust led to stress and perhaps less efficiency in achieving project goals. Participants in these types of collaborations should recognize the importance of trust in these relationships.

Project leaders also underestimated the difficulties posed by distances between sites, particularly in conducting the research projects. Electronic communication is a poor substitute for face-to-face interaction when working with inexperienced investigators. Establishing closer ties between the students and experienced cancer control investigators in their geographic locations would have helped to alleviate some of the problems in the mainland sites. However, few cancer control investigators live on the islands of Guam and American Samoa.

The other major challenge involved financial management of the project, which required substantially more time and resources than the community or university participants anticipated. In part, this was due to stringent university budget policies and the lack of financial expertise in some of the CBOs. The scope of the project also was a factor. By the end of the project, PICCN held 7 subcontracts with community groups and coordinated 7 pilot research projects. As a result of this complexity, the University's timeliness in payment of CBO invoices was far from ideal. Leaders of similar projects should consider such administrative demands when developing their budgets.

What is the legacy of PICCN? First, thousands of Pacific Islanders have learned about cancer and cancer prevention measures in their own languages and in culturally appropriate settings. The educational materials developed by the project will help to educate Pacific Islanders about cancer for many years to come. Second, an interest in cancer control research has been instilled in an enthusiastic group of Samoan, Tongan, and Chamorro students, some of whom are pursuing advanced education in preparation for careers in this field. These students will be among the first from these ethnic groups to choose such careers and have the potential to be leaders in cancer control efforts. Third, PICCN initiated some of the first studies on the cancer control needs of Pacific Islanders, and this developmental research will provide the foundation for future investigations and intervention programs that will address the cancer control needs of this population.

CONCLUSIONS

Through its cancer awareness, education, and research activities, PICCN has advanced the goal of improving cancer control among Pacific Islanders and has set the stage for interventions that will help to eliminate cancer-related health disparities in this country.

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