From Biology to Policy: Addressing Cervical Cancer Disparities in Appalachia

Exploring the complex factors behind cervical cancer disparities and the multi-level solutions being implemented to address this health crisis.

Explore the Research

Understanding the Disparity: A Multi-Level Problem

Cervical cancer disparities in Appalachia cannot be traced to a single cause. Instead, researchers have identified a complex interaction of factors operating at multiple levels.

11.7
per 100,000 women in Appalachian Kentucky 5

Compared to the national average of 7.5 per 100,000 women, this represents a significant health disparity in the region.

42%
of Appalachia is rural

Compared to 20% of the total U.S. population, creating significant challenges for healthcare access 4 .

Factors Contributing to Cervical Cancer Disparities

Level Factors Impact on Cervical Cancer
Biological Higher HPV infection rates, genetic variations in TGF-beta pathway, higher rates of abnormal cytology Increased biological susceptibility to cervical cancer development and progression
Individual Smoking, binge drinking, early sexual activity, multiple partners, depression, cancer worry Elevated behavioral risk factors and psychological barriers to screening
Community Poverty, low educational attainment, geographic isolation, transportation barriers, cultural identity Reduced access to care and lower prioritization of preventive health services
Healthcare System Fewer providers and facilities, inconvenient clinic hours, preference for female providers, communication issues Structural barriers limiting screening availability and follow-up care

The CARE Research Journey

The Community Awareness Resources and Education (CARE) project at Ohio State University has spent nearly two decades unraveling the complex web of factors that make Appalachian women vulnerable to cervical cancer 4 .

Project 1: Genetic Susceptibility

Investigated genetic susceptibility by examining polymorphic variants in the transforming growth factor beta (TGFB) signaling cascade among Appalachian women diagnosed with invasive cervical cancer compared to healthy controls.

Project 2: Social Networks and Tobacco Use

Explored how social relationships influence smoking behavior among Appalachian women, finding that current smokers had more smoking ties in their networks 4 .

Project 3: Screening Interventions

Developed and tested interventions to increase cervical cancer screening, including the use of lay health advisors.

Project 4: Follow-up Care

Examined follow-up care after abnormal screening results, identifying barriers and facilitators to receiving timely treatment.

Methodology

The second wave of the CARE project (2011-2017) comprised four distinct but interrelated studies designed to address different aspects of the multi-level model 4 .

This comprehensive approach allowed researchers to connect discoveries at the molecular level with real-world health behaviors and outcomes.

Key Findings

  • Novel contributions of TGFB pathway-associated low-penetrance alleles on cervical cancer risk
  • Unexpected association between genetic features and Appalachian self-identification
  • Culturally-tailored approaches effectively increased screening rates

Beyond HPV: Novel Genetic Connections

While HPV infection is the primary cause of cervical cancer, genetic factors appear to influence which women progress from infection to cancer.

"This study demonstrated novel contributions of TGFB pathway-associated low-penetrance alleles on the risk of cervical cancer in Appalachian women" 4

Selected Genetic Findings from the CARE Project

Genetic Variation Interaction Factor Effect on Cervical Cancer Risk
TP53 rs1042522 Smoking Significant interaction (p=0.02)
TGFB1 rs1800469 Smoking Significant interaction (p=0.02)
NQO1 rs1800566 Alcohol consumption Significant interaction (p=0.05)
TGFBR1 rs11466445 Sexual intercourse before age 18 Significant interaction (p=0.034)
TGFBR1 rs7034462 Sexual intercourse before age 18 Significant interaction (p=0.013)
TGFBR1 rs11568785 Sexual intercourse before age 18 Significant interaction (p=0.008)

Transforming Fear into Action: The Psychology of Cancer Worry

Beyond the biological and systemic factors, psychological elements play a crucial role in cervical cancer screening behavior.

Quantitative Findings

The quantitative analysis revealed that the perception of being at higher risk of cervical cancer and having greater general distress about cancer were both associated with greater cancer-specific worry 2 .

This worry had a complex relationship with screening behavior—sometimes motivating action, but often leading to avoidance.

Qualitative Insights

Qualitative findings provided deeper insight into these psychological processes. Researchers found that negative affect about cervical cancer had a largely concrete-experiential component 2 .

"Affective representations tend to operate at the concrete-experiential level, meaning that the individual may call upon her own experience or imagine herself in the situation" 2

Psychological Barriers and Facilitators to Cervical Cancer Screening

Cancer Worry

Can either motivate or deter screening depending on level and coping mechanisms

Potential Intervention: Cognitive-behavioral approaches to manage worry
Embarrassment

Deters screening, particularly with male providers

Potential Intervention: Ensure availability of female providers
Fear of Pain

Creates avoidance behavior

Potential Intervention: Provide clear information about what to expect
Fatalism

Reduces motivation for prevention

Potential Intervention: Emphasize success stories and positive outcomes

From Research to Reality: Policy and Community Solutions

The ultimate test of any research lies in its ability to generate real-world impact.

Community-Based Interventions

Lay Health Advisors Intervention 51.1%
Pap test receipt in intervention group vs. 42% in usual care 4
Other Community-Level Strategies:
  • Patient navigation services to help women overcome logistical barriers
  • Community outreach programs to increase awareness and reduce stigma
  • Material supports such as transportation assistance or childcare during appointments
  • Clinic-level interventions including extended hours and female provider options 6

Policy Recommendations

Beyond individual interventions, researchers suggest that meaningful progress requires policy changes that address the fundamental structural barriers to care:

Increasing the quantity and quality of care in underserved areas
Expanding insurance coverage for preventive services
Investing in telehealth infrastructure to overcome geographic barriers
Implementing system-level changes to facilitate care coordination 2 6
"From a policy perspective, increasing the quantity and quality of care may also improve CCS rates and decrease the burden of cancer in Appalachia" 2

A Toolkit for Change

Essential resources for addressing cervical cancer disparities in Appalachia and similar underserved regions.

Lay Health Advisors

Bridge cultural and communication gaps between healthcare systems and communities

Application: Local community members provide education and support in culturally appropriate ways

Patient Navigation

Help patients overcome logistical and system barriers

Application: Assist with transportation, appointment scheduling, and follow-up care

HPV Self-Sampling

Increase screening access for women reluctant to undergo clinical exams

Application: Allows women to collect their own samples in private, increasing participation

Telehealth Services

Extend specialist care to remote areas

Application: Connect rural providers with specialists for consultation and follow-up care

Genetic Testing

Identify individuals with elevated susceptibility

Application: Target prevention resources to those at highest risk

Social Network Analysis

Understand how health behaviors spread through communities

Application: Design interventions that leverage natural community connections

Toward a Brighter Future

The story of cervical cancer disparities in Appalachia is not merely one of problems and challenges, but of the remarkable scientific journey to understand and address them.

Through decades of research, we have moved from recognizing the disparity to unraveling its complex causes across biological, behavioral, community, and health system levels.

As we stand at the intersection of biology and policy, between laboratory discoveries and community needs, we find reason for hope. With continued commitment to evidence-based solutions and health equity, the Appalachian region may one day serve not as an example of disparity, but as a model for how science and community partnership can overcome even the most complex health challenges.

References