Researchers document dramatic increase in advanced stage cervical cancer and deaths from cervical cancer in Appalachian Kentucky

While the overall incidence and death rates from cervical cancer have dropped in the U.S., the opposite has been occurring in Appalachian Kentucky – a steady increase. The death rate from cervical cancer in Appalachian Kentucky is now twice that of the national rate.

A team of cancer population scientists from MUSC Hollings Cancer Center and the University of Kentucky Markey Cancer Center documented the increase through investigation of county-level data from 2000 through 2019. Their findings are published this month in JAMA Network Open.

“The rapidly growing disparities that we're observing in the Appalachia region are disturbing, particularly in the era of screening availability and advancements,” said Ashish Deshmukh, Ph.D., senior author on the paper. He is co-leader of the Cancer Control Research Program at Hollings.

Krystle Lang Kuhs, Ph.D., co-leader of the Cancer Prevention and Control Research Program at Markey and a co-author on the paper, said the findings underscore the importance of ensuring that every woman has access to preventive services.

“With advances in HPV vaccination and screening, cervical cancer is now a completely preventable disease,” Kuhs said.

The researchers analyzed data from the National Cancer Institute's Surveillance Epidemiology and End Results for Kentucky and found that cervical cancer incidence in the Appalachian region increased nearly 3% per year over the last decade. The death rate also trended upward in the Appalachian region, at 4.5% per year. Meanwhile, the rates in non-Appalachian counties in Kentucky, as well as nationally, are declining.

Deshmukh, who studies the epidemiology of and prevention pathways for cancers caused by HPV, previously documented a nationwide increase in cervical cancer in women in their early 30s. That paper, published in JAMA, noted that one possible reason for the increase was because of a decline in screenings among women in their 20s.

This publication was a result of collaboration between Deshmukh and Kuhs after they compared notes and reflected on the challenges that both South Carolina and Kentucky face in getting prevention and screening services to rural areas.

“We started exploring patterns in cancer incidence and mortality, as a result of our mutual curiosity, and we found this disturbing rise,” Deshmukh said.

The increase is most startling for distant-stage cancer, or cancer that isn’t diagnosed until it has already spread through the body. For distant-stage cervical cancer, the researchers found an increase of 5.5% per year.

Robust data available through the Kentucky Cancer Registry allowed the researchers to study county-level trends, Deshmukh said. He thinks that the example of Kentucky could point to hidden issues in other regions with high levels of persistent poverty and problems with access to screening and follow-up care.

Deshmukh added that, given the descriptive nature of the study, which lacks information on screening use and risk factors, they couldn’t draw conclusions about the reasons for the increase. However, he said, given the rising rates of distant-stage cancer and deaths, it is clear that the data shows a true increase as a result of lack of screening and follow-up care in Appalachian Kentucky. This isn’t a case of a disease appearing to be more prevalent only because screening is catching more cases.

“The increasing incidence and mortality due to cervical cancer in Appalachia suggests that we are not doing enough to ensure that women residing in rural areas have access to the preventive and medical services they need,” Kuhs said.

Bringing cervical cancer screening to rural areas

Screening is critical to preventing cervical cancer. Guidelines recommend that all women ages 21 through 29 have a Pap smear every three years. Women between 30 and 65 should co-test, which means getting a Pap smear along with an HPV test, every five years.

In South Carolina, Hollings brings cervical cancer screenings to rural communities through its Mobile Health Unit, which provides mammography, cervical cancer screening and skin checks. The unit visited nine counties and provided cervical cancer screenings to 288 patients in the first nine months of the year.

And through a Duke Endowment grant, the cancer center is working with hospitals in the MUSC Health Regional Health Network to direct vulnerable populations to screenings for five cancers with high mortality rates in South Carolina, including cervical cancer.

Markey also has several ongoing initiatives to improve the uptake of cervical cancer prevention services in Appalachia, including a P01 program grant involving four university partners and 35 Appalachian health clinics. Investigators are working directly with community members to plan and implement methods to increase cervical cancer screening and HPV vaccination as well as reduce tobacco use.

The HPV vaccine, which can protect against the strains of HPV that can cause six types of cancer, is recommended for boys and girls at 11 or 12 years old. People can get the vaccine on a catch-up schedule up to age 26, and those up to age 45 may also be eligible for the vaccine if their doctors think it would be beneficial in their individual situations.

Marvella Ford, Ph.D., associate director of Population Science and Community Outreach and Engagement (COE) at Hollings, said that her office works closely with Deshmukh and other investigators to identify areas with low HPV vaccination rates.

"We are transforming the delivery of the HPV vaccine in South Carolina by improving its accessibility through our mobile health approach,” she said. “Working in collaboration with Dr. Deshmukh and his team, we are disseminating evidence-based findings related to the HPV vaccine to the communities we serve while simultaneously gaining the input and direction from the community into the development of a new data visualization tool led by Dr. Deshmukh and his team.

“The bi-directional and community-engaged partnership between the COE Office, Dr. Deshmukh and team and community members has informed Dr. Deshmukh’s innovative research here in South Carolina, paving the way for new public health developments in cancer prevention and control.”

Reaching vulnerable populations

Deshmukh noted that there are other pockets of medically underserved areas in the country, which often coincide with areas of persistent poverty and can experience higher cancer rates. Puerto Rico, for example, is also seeing a rapid increase in cervical cancer rates.

Deshmukh is working with colleagues at the University of Puerto Rico Comprehensive Cancer Center to study the most effective method for increasing screening rates there.

The geographic disparities that are seen in Puerto Rico, Appalachian Kentucky and perhaps elsewhere require public health approaches tailored to the unique barriers of each region, Deshmukh said.

Other authors of the study include Haluk Damgacioglu, Ph.D., Kalyani Sonawane, Ph.D., and Elizabeth Hill, Ph.D., from Hollings and Todd Burus from Markey.

About  MUSC Hollings Cancer Center 

MUSC Hollings Cancer Center is South Carolina’s only National Cancer Institute-designated cancer center with the largest academic-based cancer research program in the state. The cancer center comprises more than 130 faculty cancer scientists and 20 academic departments. It has an annual research funding portfolio of more than $44 million and sponsors more than 200 clinical trials across the state. Dedicated to preventing and reducing the cancer burden statewide, the Hollings Office of Community Outreach and Engagement works with community organizations to bring cancer education and prevention information to affected populations. Hollings offers state-of-the-art cancer screening, diagnostic capabilities, therapies and surgical techniques within its multidisciplinary clinics. Hollings specialists include surgeons, medical oncologists, radiation oncologists, radiologists, pathologists, psychologists and other clinical providers equipped to provide the full range of cancer care. For more information, visit hollingscancercenter.musc.edu.