The Cancer Clear & Simple Story: Developing a Cancer Prevention Curriculum for Rural Wisconsin Through a Community Partnership.

To address rural cancer disparities, the University of Wisconsin Carbone Cancer Center launched a rural cancer project through its Cancer Health Disparities Initiative (CHDI) in 2010. With support from the National Cancer Institute's (NCI) National Outreach Network, CHDI conducted an assessment of rural counties and partnered with Adams County to implement a collaborative cancer education project. Together CHDI and Adams County partners selected an evidence-based educational curriculum, Understanding Cancer, as a basis for local adaptation for use with rural Wisconsin communities. The new curriculum, titled Cancer Clear & Simple (CC&S), consists of three modules: (1) cancer basics, (2) cancer prevention, and (3) cancer screening. CC&S has also been culturally tailored for African American and Latino populations. The adaptation utilized community involvement throughout a multi-step process to ensure cultural appropriateness. The process included materials selection, translation, conceptual adaptation, visual adaptation, and validation with target audiences. All adaptations of the curriculum incorporate health literacy principles and is designed to build knowledge and improve health-related decision-making around lung, colorectal, skin, breast, cervical, and prostate cancer. Current efforts seek to (1) increase the evidence of CC&S's effectiveness through additional research, (2) expand its use by new audiences, and (3) adapt it into a web-based platform featuring a cancer prevention serious game.

Overcoming Barriers: Evidence-Based Strategies to Increase Enrollment of Underrepresented Populations in Cancer Therapeutic Clinical Trials-a Narrative Review.

Disparities in cancer incidence and mortality rates among racial and ethnic minorities (African Americans, Asian Americans, Pacific Islanders, American Indians, and Latinos/Hispanic Americans) in the USA are well documented. Enrollment of underrepresented populations in cancer therapeutic clinical trials, however, is very low. This is true despite federal mandates to ensure accrual rates adequate for analyses and the evidence that the effectiveness of specific therapies and medications varies across ethnic and racial groups. Consequently, cancer clinical decision-making is based on research studies where the majority of research participants are white males, despite the disproportionate cancer burden in racial and ethnic minority groups. To date, there have been multiple reviews detailing the barriers to enrollment for these populations in cancer clinical trials, but a notable lack of research on possible strategies to overcome them. The aim of this narrative review is to summarize the current evidence for effective approaches to increase enrollment of underrepresented minorities in cancer therapeutic clinical trials. These approaches include (1) cultural and linguistic adaptations of marketing materials, (2) the use of patient navigators, and (3) building ongoing community partnerships. The majority of studies reviewed employ multiple improvement strategies simultaneously. Identifying effective approaches to increase enrollment of underrepresented populations in cancer clinical trials is a critical step in reducing persistent disparities in cancer incidence and mortality among racial and ethnic populations.

The High Burden of Cancer Among American Indians/Alaska Natives in Wisconsin.

OBJECTIVE: American Indians/Alaska Natives (AI/AN) who live in the Northern Plains, includingt Wisconsin, face disproportionate cancer disparities. This report examines cancer incidence and mortality based on residence in Contract Health Service Delivery Areas (CHSDA) to assess disparities between AIs/ANs and other racial populations in Wisconsin. METHODS: To improve identification of the AI/AN race, incidence data were linked with Indian Health Service (IHS) patient records. Analysis further focused on residents of IHS CHSDA counties. Age-adjusted cancer incidence and mortality rates (2007-2011) were calculated by sex and major cancer sites. AI/AN rates were.analyzed for both statewide and CHSDA residency in comparison to statewide white rates and comparable national rates. RESULTS: In comparison with whites, AI/ANs in CHSDA counties had higher incidence rates of cervical (3.5 times), liver (3.2), lung (2.3), and kidney cancers (2.1), and higher mortality rates for liver (2.7), kidney (2.2) and lung (1.9) cancers. Although there were similar rates of prostate cancer incidence between the 2 populations, AI/ANs were 1.9 times more likely to die from the disease. CONCLUSIONS: AI/AN individuals in Wisconsin CHDSA counties experience the highest cancer incidence rate of any racial group for both genders combined and for females. This population also has the highest mortality rate among all racial groups for both males and females. To meet the Wisconsin Comprehensive Cancer Control Plan 2015-2020 and Healthy People 2020 goals of lowering cancer incidence and mortality rates, the disproportionate cancer burden among AIs.

Culturally-Tailored Smoking Cessation for Adult American Indian Smokers: A Clinical Trial.

This collaborative, community-engaged project developed and tested a Culturally-Tailored Treatment (CTT) for American Indian/Alaska Native (AI/AN) smokers in the Menominee tribal community. One hundred three adult AI/AN smokers were randomized to receive either Standard Treatment (n= 53) or CTT (n = 50) for smoking cessation. Both treatment conditions included 12 weeks of varenicline and four individual counseling sessions but differed in terms of cultural tailoring of the counseling. The primary outcome was 7-day biochemically-confirmed point-prevalence abstinence (PPA) at the 6-month end-of-study visit. Both intention-to-treat (ITT) and responder-only analyses were conducted. There were no statistically significant group differences in 7-day PPA. The overall ITT abstinence rate at 6 months was 20%; the responder-only rate was 42%. The current study represents the first randomized smoking cessation clinical trial testing a culturally-tailored smoking cessation intervention designed for a specific AI/AN tribal community that combined FDA-approved cessation medication (varenicline) and innovative cultural intervention components.

Look local: the value of cancer surveillance and reporting by American Indian clinics.

INTRODUCTION: Cancer incidence and mortality rates for American Indians in the Northern Plains region of the United States are among the highest in the nation. Reliable cancer surveillance data are essential to help reduce this burden; however, racial data in state cancer registries are often misclassified, and cases are often underreported. METHODS: We used a community-based participatory research approach to conduct a retrospective ascertainment of cancer cases in clinic medical records over a 9-year period (1995-2003) and compared the results with the state cancer registry to evaluate missing or racially misclassified cases. Six tribal and/or urban Indian clinics participated in the study. The project team consisted of participating clinics, a state cancer registry, a comprehensive cancer center, an American Indian/Alaska Native Leadership Initiative on Cancer, and a set of diverse organizational partners. Clinic personnel were trained by project staff to accurately identify cancer cases in clinic records. These records were then matched with the state cancer registry to assess misclassification and underreporting. RESULTS: Forty American Indian cases were identified that were either missing or misclassified in the state registry. Adding these cases to the registry increased the number of American Indian cases by 21.3% during the study period (P = .05). CONCLUSIONS: Our results indicate that direct reporting of cancer cases by tribal and urban Indian health clinics to a state cancer registry improved the quality of the data available for cancer surveillance. Higher-quality data can advance the efforts of cancer prevention and control stakeholders to address disparities in Native communities.

Cancer health disparities persist among African Americans in Wisconsin.

BACKGROUND: Cancer incidence and mortality rates have decreased over the last few decades, yet not all groups have benefited equally from these successes. This has resulted in increased disparities in cancer burden among various population groups. OBJECTIVE: This study examined trends in absolute and relative disparities in overall cancer incidence and mortality rates between African American and white residents of Wisconsin during the period 1995-2006. METHODS: Cancer incidence data were obtained from the Wisconsin Cancer Reporting System. Mortality data were accessed from the National Center for Health Statistics' public use mortality file. Trends in incidence and mortality rates during 1995-2006 for African Americans and whites were calculated and changes in relative disparity were measured using rate ratios. RESULTS: With few exceptions, African American incidence and mortality rates were higher than white rates in every year of the period 1995-2006. Although cancer mortality and incidence declined for both groups over the period, relative racial disparities in rates persisted over the period and account for about a third of African American cancer deaths. CONCLUSIONS: Elimination of cancer health disparities will require further research into the many contributing factors, as well as into effective interventions to address them. In Wisconsin, policymakers, health administrators, and health care professsionals need to balance resources carefully and set appropriate priorities to target racial inequities in cancer burden.

Improving cancer incidence estimates for American Indians in Wisconsin.

OBJECTIVES: The purpose of this study was to improve the measurement of cancer incidence among American Indians in Wisconsin and compare incidence rates with state and national incidence rates. METHODS: The Wisconsin Cancer Reporting System (WCRS) entered into a data linkage project with CDC and the Indian Health Service (IHS) to improve classification of American Indian cancer cases in Wisconsin. WCRS data were linked to IHS patient registration files to identify American Indian cases that were misclassified as a non-Indian race for the years 1998-2002. American Indian age-adjusted rates and rate ratios for major cancer sites were compared before and after the linkage, and with statewide and national rates. RESULTS: The age-adjusted incidence rate for all cancer among American Indians increased from the pre-linkage rate of 386.3 per 100,000 to the post-linkage rate of 471.7 per 100,000, a statistically significant increase. The post-linkage rate was over twice the comparable Surveillance Epidemiology and End Results (SEER) national rate among American Indians at 233.6 per 100,000. Post-linkage American Indian incidence rates for male colorectal and female lung cancers were higher than those for the state average. CONCLUSIONS: In contrast to earlier data, the linkage results show that American Indians had similar cancer incidence compared to the general population in Wisconsin, and over twice as high as national SEER American Indian rates. Post-linkage rates resulted in more accurate site-specific and geographically focused cancer incidence rates to help target the national and state priorities of addressing disparities among American Indians.

Menominee perspectives on commercial and sacred tobacco use.

The Menominee Indian Tribe of Wisconsin has the highest smoking rate in the state. To address the resultant health disparities, the tribe conducted a qualitative pilot project to examine tobacco use. The findings indicated mainstream models of addiction did not capture the tribe's context well; the Indigenist Stress-Coping Model was most applicable. Participants suggested that Menominee-centric ways of knowing related to commercial and sacred tobacco use should be included in all levels of prevention as a key strategy. Recommendations include primary prevention targeted specifically to youth, pregnant women, and adults who care for children, as well as access to commercial tobacco products.

A community-specific approach to cancer research in Indian country.

BACKGROUND: Health care leaders in a small, rural, American Indian community and university partners used the community-based participatory research (CBPR) method to survey cancer survivors. OBJECTIVES: We sought to provide support for the use of CBPR to generate ideas for how to improve the detection and treatment of cancer in American Indian communities. METHODS: Partners worked together to develop a mail-out survey and send it to the Indian health clinic's patients who had cancer in the past 5 years. The survey sought information on their experiences with cancer screenings, cancer diagnoses, and accessing and receiving cancer treatment. RESULTS: Community leaders identified three priority areas for intervention: (1) high incidence of breast cancer; (2) lack of culturally appropriate cancer education; and (3) need for a more in-depth assessment. CONCLUSIONS: CBPR's partnership principle allowed for results to be viewed within the community's context, availability of community resources, and relevant cultural beliefs and traditions.

Lessons learned from a community-based participatory research project to improve American Indian cancer surveillance.

BACKGROUND: American Indian and Alaska Native cancer incidence data are limited by underreporting and misclassification. These populations also suffer from a history of research abuse. OBJECTIVES: The project's goal was to use community-based participatory research (CBPR) to assess the local burden of cancer in the American Indian communities in Wisconsin and assess the accuracy of Wisconsin American Indian cancer data. METHODS: Thirteen organizations partnered to conduct a retrospective review of American Indian clinics cancer cases. A match of the clinic identified cases with Wisconsin Cancer Reporting System records was then conducted. LESSONS LEARNED: Relationship building, mutual education, and local engagement in data interpretation were significant factors in this project achieving its objectives and laying a foundation for future research partnerships. CONCLUSIONS: This project demonstrates the successful application of CBPR in a complex multisite project with multiple partners using collective resources to address cancer health disparities.