Reducing the Cancer Burden in Appalachian Kentucky
A PRC strives to reduce health disparities in hard to reach communities
Baretta Casey, MD, MPH, was a family physician in Appalachian Kentucky with a special motivation to reduce cancer rates. Her father, a coal miner, died of lung cancer. Ovarian cancer killed a first cousin. Another cousin was treated for ovarian and breast cancer, and another cousin for throat cancer. An aunt underwent mastectomy for breast cancer. Her grandmother, a local midwife who inspired Dr. Casey to study medicine, died of pancreatic cancer that Dr. Casey herself diagnosed. And, this October, lung cancer was diagnosed in Dr. Casey’s sister.
Dr. Casey says that when she practiced medicine in her hometown of Pikeville, Kentucky, “I diagnosed lung cancer, colon cancer, cervical cancer, breast cancer, prostate cancer—there was hardly any cancer I know of that wasn’t diagnosed in my practice. The percentage of patients in my practice who had cancer was very high.” In fact, Kentucky has the highest cancer death rate in the United States—in 2007, the latest year for which data are available, 213 of every 100,000 people died of cancer; nationwide, the cancer death rate was 178 per 100,000.1
Dr. Casey is now a coinvestigator at the University of Kentucky’s Rural Cancer Prevention Center, a CDC-funded Prevention Research Center (PRC). She and her colleagues at the PRC are researching ways to reduce and prevent cancer incidence and mortality in Kentucky’s Appalachian Mountain region, which has the state’s highest cancer death rate.2 The PRC addresses several types of cancer via a multipronged approach—community outreach; education of medical professionals, students, and community members; and research into social factors affecting cancer risk. In addition, the researchers are tracking their impact by drawing on information in the state’s cancer surveillance system.
Why So Much Cancer in Kentucky?
Dr. Casey believes several factors may contribute to Kentucky’s cancer rate including poverty, inadequate insurance, and reduced access to medical care because of difficult mountain terrain, lack of transportation, unemployment, and a shortage of health care providers. She also believes genetics may play a role. And she says the unhealthy behaviors seen in much of the nation—smoking, lifestyles, poor diet—are risk factors in Kentucky as well.
Renee Neace, a local health department education director and member of the Kentucky PRC’s community advisory board, personally witnessed the toll that unhealthy behaviors take. Her father, born and raised in Appalachian Kentucky, died of colon cancer. Ms. Neace says her father seemingly was fit, but a poor diet of fried foods and not a lot of vegetables may have contributed. In addition, he was never screened for colorectal cancer.
“It was a situation where he felt uncomfortable and did not want to be screened,” Ms. Neace says. “He would never go to the doctor unless he was sick. If he had been screened, it would have saved his life.”
Researching Answers to Cancer Questions
The PRC’s research focuses on cervical, breast, and colorectal cancer (CRC). The research explores reasons for disparities in cancer screening, the effect of health literacy on patients’ understanding of cancer education materials, and local residents’ access to fruits and vegetables. In companion work, the center is learning about health care providers’ attitudes toward the vaccine that protects against the human papillomavirus (HPV).
HPV, which can be passed from one person to another during sexual activity, can cause cervical and other cancers and is the focus of the PRC’s core research project. The project is testing how well a promotional video, counseling, and a social marketing campaign increase use of HPV vaccination and screening (Pap) tests among young women in an eight-county research area. Three doses of HPV vaccine are recommended for girls aged 11 or 12 years old, or females through age 26 if they haven’t already been vaccinated.3 The vaccine protects against the two types of HPV that cause approximately 70% of cervical cancer cases.
“Seventy percent is good, but it is not good enough,” says Richard Crosby, PhD, the Kentucky PRC’s director. “The other 30% of cervical cancer cases need to be found by Pap test screening.”
The Pap test is used to detect abnormal changes in cells on the surface of the cervix before they may become invasive cancer. Regular pap tests are recommended for women beginning at age 21, or within three years of when they begin having sex, whichever is first.4 (Learn more about [PDF - 216KB] Pap test recommendations.) In Kentucky, 19% of women have not had a Pap test within the past three years.5 And despite the benefits of vaccination, only 27% of girls aged 13–17 years in Kentucky have had the recommended three doses of HPV vaccine.6“People often feel like, well, this doesn’t apply to me. My partner doesn’t have sex with anybody but me, and so there’s no way HPV will ever get into my body,” Dr. Crosby maintains. “For many women that may be true, but for so many others that’s a complete fairy tale.”
Gaining Community Trust
To connect with residents for education and research recruitment, Dr. Casey says the Kentucky PRC has to break through a distrust of “outsiders.”
“The Appalachian people are independent and don’t take well to outsiders telling them what to do,” Dr. Casey says. “That’s part of our culture, and it goes back for generations. To survive in the mountains, people had to be independent and self-sufficient.”
This culture led the PRC to hire Dr. Casey and other staff raised in Appalachia. The PRC also uses an innovative method to reach out to these independent Kentuckians—attending hog roasts, which serve as occasions for health promotion. The PRC and partners participate in about 20 roasts a year at shopping venues, college campus events, health fairs, and local festivals. The aroma draws in passers-by.
“One thing we’ve learned is that people will follow their stomachs,” says PRC Associate Director Wallace Bates. “In addition, the roasts really help strengthen our community partnerships.”
At the hog roasts, PRC staff hand out information about breast cancer, colorectal cancer, and HPV. Nurses are on hand to provide free HPV vaccination. Women who accept the vaccination are asked if they would take part in the PRC’s research. Mr. Bates says that thanks largely to the roasts and community partnerships, the researchers enrolled 150 participants in the core project during the first year of research, twice as many as they had predicted.
Reaching Through Teaching
Dr. Casey is in charge of the PRC’s training.
“Teaching is closest to my heart,” she says. “I truly believe that people seek knowledge to make a better life for themselves and their children, so giving them that knowledge is vastly important.”
During the past two years, the PRC has trained more than 400 researchers, public health students, health care providers, and community members in five areas:
- Conducting stop-smoking classes.
- Promoting colon and cervical cancer screening.
- Promoting HPV vaccination and Pap testing.
- Educating about cervical cancer and the benefits of the HPV vaccine.
- Providing breast and cervical cancer continuing education for nurses.
Additionally, Dr. Casey has developed an elective rotation for family medicine and preventive medicine residents at the University of Kentucky College of Public Health. The elective trains the residents in rural cancer research at the PRC. Four students signed up for the rotation’s inaugural year, which began in September. The residents are helping conduct real-world research as they learn. For instance, one student is focusing on a study that involves women at a medical visit collecting their own vaginal swab sample for HPV testing, rather than having a doctor do so. The research looks at whether this method makes women more likely to return for follow-up testing and treatment.
Kentucky Cancer Registry: A Vital State Partner
The PRC researchers hypothesize that because of the PRC’s efforts to increase HPV vaccination and screening, the incidence of pre-invasive cervical cancer will decrease in the research area. The researchers are relying on the state-funded Kentucky Cancer Registry (KCR) to measure the changes. The registry, also located at the University of Kentucky, records every incidence of cancer in the state.
“The Kentucky registry is one of only a few registries that collect complete and up-to-date information on pre-invasive cervical cancer cases,” says KCR director Tom Tucker, PhD, MPH.
When the HPV vaccine became available, the KCR realized that data on pre-invasive cervical cancer would be useful for measuring the vaccine’s impact. So Dr. Tucker, along with colleagues at CDC and three other registries, developed a uniform definition of pre-invasive cervical cancer and created a system to collect data on those cases. Now, the KCR can track all pre-invasive cervical cancer cases in Kentucky within two months of diagnosis.
The KCR collects data on all cases of cancer that are diagnosed or treated in any Kentucky health care facility—from large hospitals to individual practices to pathology labs. The data include the patient’s age, sex, race, and county of residence, information that is valuable for researchers and medical professionals tracking and seeking ways to control cancer. These data show where in the state the cancer control programs are and aren’t working.
“The registry gives us eyes,” Dr. Tucker says. “We can see where to focus our attention. If we had no surveillance systems, we’d be guessing. We might be doing things, but we’d have no way of knowing if we were having an impact, and we’d have no way of directing limited resources to areas of greatest need.”
Dr. Tucker says the registry played a pivotal role in a dramatic reduction in Kentucky’s incidence of colorectal cancer (CRC). In 2001, registry data showed that Kentucky had the highest incidence of CRC of all 50 states. Two years prior, Kentucky had the nation’s second-lowest CRC screening—colonoscopy or sigmoidoscopy rate7 of all 50 states. CRC screening data for 2001 were unavailable. Dr. Tucker presented these statistics to regional health authorities, prompting them to implement policies to increase CRC screening. The Kentucky PRC helped by developing training modules for physicians and researching methods for educating residents about CRC and screening.8,9 The state general assembly passed a bill requiring insurers to pay for screening and another bill establishing a screening program for people without insurance. KCR data showed that as screening rates increased, CRC incidence and mortality decreased. See chart.
“We began the interventions in 2002, and by 2006 the rates had declined to the point that there were 193 fewer colorectal cancer cases diagnosed each year,” says Dr. Tucker. “We think this represents a major public health success story.”10“The state registry is the eyes,” Dr. Tucker re-emphasizes, “and the PRC is the hands. Together, we really did make a difference.”
Dr. Tucker and researchers at the Kentucky PRC are starting a new project to analyze cancer survival in Appalachia. They will look at how long people live after diagnosis of lung, colorectal, prostate, female breast, ovarian, or cervical cancer. The researchers will identify differences between Appalachian and non-Appalachian areas, as well as differences among subregions of Appalachia.
“Cancer survival in Appalachia has never been examined before,” says Dr. Tucker. “The cancer incidence and mortality data we have don’t capture all aspects of the cancer burden in Appalachia. Policy makers and health care providers will be able to use this survival information to measure the impact of cancer control activities and make improvements.”
The Kentucky PRC researchers hope their research, education, and community outreach will continue to contribute to decreased cancer rates in the state. And for people in whom cancer is diagnosed, they hope their efforts contribute to more happy endings like that of Sandy Good, former PRC community liaison. Ms. Good, born in northern Appalachia (Pennsylvania) and a resident of Appalachian Kentucky since 1979, received a routine Pap test in 1988 and learned that she had cervical cancer. But the cancer was caught early enough for surgical removal.
“Pap tests saved my life,” Ms. Good says. “But I think many women wouldn’t have had the same sense of urgency to be screened as I did. The PRC’s research could help change that. Our research could end up being life-saving.”
1. CDC. 2007 Data from the CDC National Program of Cancer Registries Web site. Available at http://apps.nccd.cdc.gov/DCPC_INCA/DCPC_INCA.aspx.
2. University of Kentucky. 2008 Data from the Kentucky Cancer Registry Web site. Available at
3. Centers for Disease Control and Prevention. Quadrivalent Human Papillomavirus Vaccine
recommendations of the Advisory Committee on Immunization Practices (ACIP). MMWR. 2007;56(No. RR-2). Available at http://www.cdc.gov/mmwr/preview/mmwrhtml/rr56e312a1.htm.
4. Centers for Disease Control and Prevention. Sexually transmitted diseases treatment guidelines, 2010. MMWR. 2010;59(No. RR-12). Available at http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5912a1.htm.
5. Centers for Disease Control and Prevention. 2010 Data from the Behavioral Risk Factor Surveillance System Web site. Available at http://apps.nccd.cdc.gov/brfss/display.asp?cat=WH&yr=2010&qkey=4426&state=KY.
6. Centers for Disease Control and Prevention. 2010 Data from the CDC National Immunization Survey-Teen (NIS-Teen), United States, 2010 Web site. Available athttp://www.cdc.gov/mmwr/preview/mmwrhtml/mm6033a1.htm?s_cid=mm6033a1_w.
7. Centers for Disease Control and Prevention. 1999 Data from the Behavioral Risk Factor Surveillance System Web site. Available at
8. Kelly KM, Phillips CM, Jenkins C, Norling G, White C, Jenkins T, Armstrong D, Petrik J, Steinkuhl A, Washington R, Dignan M. Physician and staff perceptions of barriers to colorectal cancer screening in Appalachian Kentucky. Cancer Control. 2007 Apr [cited 2011 Oct 18]; 14(2):[about 9 pp.]. Available at http://www.moffitt.org/CCJRoot/v14n2/pdf/167.pdf [PDF - 161KB].
9. Hatcher J, Dignan MB, Schoenberg N. How do rural health care providers and patients view barriers to colorectal cancer screening? Insights from Appalachian Kentucky. Nursing Clinics of North America. 2011;46(2):181-92.
10. Tucker T, Nee J. Using central cancer registry data. In: Menck et al editors. Cancer Registry Management Principles and Practices. Dubuque, IA: Kendall Hunt; 2011. p. 279-290.