cancer prevention in rural communities
This article examines cancer prevention outcomes using a developed community-based cancer registry. It also describes the methodology used to build and recruit to the registry. This comprehensive registry includes community participant profiles sorted by race/ethnicity and geography and presents preliminary insights about the distribution of known cancer risk/protective factors (access to care, cancer screening uptake, risk behaviors) and sociocultural and psychological factors known to influence access to health and cancer services.
Introduction
The National Cancer Institute (NCI) cancer center program has always been at the forefront of cancer research in the United States. In 2016, they designated centers to establish formal community outreach and education to solve the increasing cancer burden.
In order for the center to be successful, it needed to examine the communities from within its social, cultural, and economic points. NIH-NCI invested in cancer registries to understand incidence and mortality more in these underrepresented rural communities.
Virginia Living Well Community Registry (VALW)
One of their cancer registries is the Virginia Living Well (VALW) community registry by Massey Cancer Center (MCC). In Virginia, many of the rural counties located in the south-central region have higher overall cancer mortality rates ranging from 168 to 246 per 100,000 compared to the state (161 per 100,000). Virginia is also one of the few states that have are both breast and colorectal cancer hotspots, driven primarily by mortality rates among African American(AA)/Black Virginians.
Outreach Centers
MCC Office of Community Outreach and Engagement (COE) can be found in the urban center and in two rural communities within the cancer center area. With the help of community stakeholders, the COE provided educational programming to connect residents with resources to become experts in cancer education resources within their respective communities. They also facilitated access into communities and engaged with the registry through input on survey and distribution methods.
Using the TRUST model, an approach was created to train staff to become community spokespersons to develop culturally tailored messages. This is believed to be the first-ever community-based cancer prevention and control registry targeting rural communities in Virginia.
Team and Research Training
A total of nine staff members who are also residents of their communities were trained to recruit and administer the VALW survey. They completed training after 4 months and maintained training through yearly participation in the MCC Cancer Disparities Research symposium and periodic protocol refresher training.
Inclusion Criteria
Respondents were all adult (18 and above) residents of Virginia. Although not a criterion for inclusion, the effort is made to oversample within rural communities throughout the cancer center catchment area. Given the documented underrepresentation of rural communities in research studies and the need for tailored rural cancer prevention and control programming, the researchers leveraged their community partner network connected to the two COE offices located in rural VA counties.
Survey
Choice of constructs was solicited from cancer prevention and control researchers and community stakeholders. Guided by best practices to minimize participant burden the objective was to collect data capable of facilitating conversations and action to address the catchment area cancer burden. Questions were adapted from national health surveys or commonly used scales.
Methods
Using appropriate community outreach and engagement practices, the researchers recruited a diverse convenience sample of residents in Virginia ages 18 and above that oversampled residents living in rural areas, defined as Rural-Urban Continuum Codes (RUCC) 4–9 and African American (AA)/Black residents. Methods also included electronic surveys as well as in-person surveys b community-based staff.
Participants
Overall, VALW participants were majority female (70%), with a median age of 52 years (range 18–85) and about half (52%) reported earning less than $50,000/household annually. About a third (39%) reported high school or less education and 7% reported having no health insurance (prior to COVID-19), which mirrored Virginia state uninsured.
Most had visited a doctor (92%) and a modest majority (65%) reported visiting a dentist in the last 12 months. High rates of ever cancer screening among age-eligible adults were reported for breast cancer via mammography (91% women aged ≥40 years), cervical (85% women age ≥18 years), and colonoscopy (78% adults aged ≥50 years).
Of the women age-eligible for mammography screening, 82% reported having obtained a screen in the last 2 years. Many participants reported a BMI in the obese or overweight categories (71%), 17% of participants were current smokers, and 9% reported excessive drinking.
Results
Of the 595 participants enrolled in the study, 73% were from rural communities, 46% are AA/Black. AA/Black participants reported similar education but lower-income (p < 0.01) and health literacy (p < 0.01), lower alcohol use (p < 0.001), fewer sedentary behaviors (p = 0.01), but greater BMI (p < 0.05) compared to White participants.
Participants living in rural areas reported higher use of Medicaid (15% vs. 8%; p = 0.04) and annual household income under $50,000 (58% vs. 31%; p < 0.001), but lower (pre-COVID-19) unemployment compared to urban participants (7% vs. 13%; p = 0.03).
Despite no educational, access to care, or cancer screening differences, significantly fewer rural respondents reported participating in a clinical trial compared with urban respondents (11% vs. 24%; p = 0.001). Fewer rural residents agreed to provide biospecimen (56% vs. 75%; p < 0.000) or be recontacted for future research compared with urban residents (70% vs. 87%; p < 0.001).
Regarding obesity and other cancer risk behaviors, while AA/Black respondents were more likely to report higher BMI (86% vs. 64%; p < 0.001), they were less likely to report sedentary behaviors (82% vs. 90%; p = 0.018), depression (12% vs. 20%; p = 0.018), or excessive drinking compared with whites (5% vs. 13%; p = 0.001). There were no racial differences identified by perceived stress or everyday discrimination.
Conclusion
Based on the research findings, AA/Black participants had fewer cancer risk behaviors, similar educational attainment but lower income and health literacy compared to White respondents. Nuanced examinations of interactions among multilevel factors are needed to understand how individual, community, and institutional factors converge to maintain cancer disparities among AA/Black Virginians. Researchers suggest that there is a need for tobacco cessation, lung cancer screening, obesity treatment, and prevention initiatives.
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