The birthplace of bluegrass music, Appalachia evokes images of smoky mountains and hidden "hollers" where dulcimers, fiddles, and mandolins harmonize. But beneath this romantic veneer lies a harsher realityone that includes a higher cancer burden among its inhabitants.
The Appalachian region is inhabited by about 22 million people living in 406 counties in 13 statesfrom Mississippi to New Yorkthat straddle the Appalachian Mountains. The majority of Appalachian counties are rural, and cancer death rates in these areas are even more elevated over the national average than are the total Appalachian rates, pointed out Stephen Wyatt, D.M.D., director for cancer control at the University of Kentucky Markey Cancer Center, Lexington.
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A June article in the Centers for Disease Control and Preventions Morbidity and Mortality Weekly Report noted that cancer death rates are particularly high in Appalachia for cancers of the lung, cervix, and colon (See Stat Bite, p. 1190).
Several factors contribute to these higher rates, said Gene Lengerich, V.M.D., associate professor in the department of health evaluation sciences at Pennsylvania State University College of Medicine, Hershey, and research director for the ACN. One problem is behavior, such as high rates of tobacco use and physical inactivity. Another factor is the difficulty in accessing health care. For example, in rural areas transportation to and from health care facilities can be hampered by barriers such as mountain roads rendered impassable by snowstorms and lack of public transportation. A third problem, he said, is the relative lack of health care facilities and practitioners, such as medical oncologists, in many areas of Appalachia.
Building a Framework
The ACN is defined by geography, unlike many other special populations networks that are defined by race or ethnicity. It grew out of the Appalachian Leadership Initiative on Cancer, a project originated in 1992 by the University of Kentucky; Pennsylvania State University, University Park; and West Virginia University, Morgantown. Funded by the NCI, the initiative aimed to develop community-based coalitions to improve cancer awareness and control in Appalachia.
Investigators with the initiative worked with leaders in the community as well as with hospitals and health departments in the area to identify issues, provide information, and develop outreach activities related to cancer control, said Penn States Ann Ward, regional director and co-principal investigator for the northern region of the ACN. "We wanted community-based groups to take responsibility for their communities and figure out how to address these needs themselves."
The College of Agricultural Sciences at Penn State oversees the northern region of the ACN, which includes counties in Pennsylvania and New York, and the Mary Babb Randolph Cancer Center at West Virginia University is in charge of the ACNs north central region, which covers all of West Virginia and portions of Ohio and western Maryland. The University of Kentuckys Markey Cancer Center oversees the entire project and directs the ACNs central highlands regional program, which includes counties in Kentucky, Tennessee, and Virginia.
ACNs Goals
Investigators with the ACN hope to help academic institutions partner with communities to bring communities into early stages of research as well as into further program development and implementation. An important goal is to evaluate the effectiveness of the outreach initiatives that community coalitions have developed, said Wyatt. "What were trying to do," he said, "is to get folks to pause and look at what theyre doing and try to use good, scientifically proven interventions. And if we dont know of proven interventions, then lets establish hypotheses, test the interventions, and evaluate them to see if they make a difference."
Another of ACNs priorities involves looking at the distribution of cancer and the cancer burden in the region, said Lengerich, who, along with Wyatt and other ACN investigators, did just that in the recent article in MMWR. "From the MMWR article weve shown that mortality rates in Appalachia are higher than they are in the rest of the United States," said Lengerich. "That raises the question of cancer incidence rates," a question that he and his colleagues will answer by further analyzing cancer data from the area.
A third objective is to increase the pool of scientists who will address disparity issues in the region. To do that, said Wyatt, network investigators mentor young people at all levels, from high school to the undergraduate to the graduate level to get them interested in careers in cancer-related medicine or research in behavioral science or communications. Network investigators also mentor junior scientists to help develop their skills and their interest in the issues relevant to the Appalachian population.
Clinical Trials
Historically, participation in clinical trials among people in Appalachia has been lower than in other regions of the United States, said Wyatt. Therefore increasing community awareness of and recruitment and retention in clinical studies is another of ACNs goals. ACN is working with NCIs Cancer Information Service to disseminate information about clinical trials and other cancer control strategies to community members as well as health care providers.
Developing a better understanding of the barriers that discourage people in Appalachia from enrolling in clinical studies is a part of this goal. In the first 2 years of the project, researchers have been gathering data to determine what people know about clinical trials and what their attitudes and perceptions are, said Angel Rubio, director of community-based research at the Markey Cancer Center and program director of the ACN.
The next step will be to look into ways to educate the population about clinical trials. One approach, said Rubio, might be to use storytellingthe strong oral tradition that is part of mountain cultureto develop culturally appropriate ways of conveying information about clinical trials.
Another method of disseminating information about clinical trials involves the use of cooperative extension agents. These agents, who traditionally work with farm families, have a presence in every county in the United States and are known and trusted by the community, said Audrey Maretzki, Ph.D., professor of food science and nutrition at Penn State and co-principal investigator of the northern region of the ACN. The group at Penn State is systematically examining the cooperative extension network as a health education mechanism, said Maretzki.
Projects Under Way
ACN researchers are working with community coalitions to focus on ways to lower the elevated rates of lung, cervical, and colorectal cancer in Appalachia. Lung cancer rates clearly drive the overall cancer rate, said Wyatt, who pointed out that the smoking prevalence in tobacco-growing states such as Kentucky and West Virginia is a key factor. A pilot study at Kentucky is examining an approach to curb smoking that translates an effective peer counseling-based smoking cessation program into a self-help version. Investigators are trying to determine whether the self-help version is as effective as the standard group sessions that require many weeks of attendance, a commitment that not everyone can make, explained Wyatt.
A number of ACNs projects focus on cervical cancer. One study focuses on women with invasive cervical cancer and attempts to pinpoint where the system is failing. Is it a screening problem, a follow-up problem, or a lack of resources to purchase needed treatment? "I suspect the answer lies along a continuum, but we need to find out whats going wrong," said Wyatt.
Another pilot study at Penn State will examine the benefits of having survivors of colorectal cancer help newly diagnosed patients through the cancer treatment experience. Ward explained that each new patient with colorectal cancer will be matched with a survivor who has received peer-education training. The researchers will measure physiological indicators of stress, such as cortisol levels, in the newly diagnosed patients and will assess the patients coping skills, and the results will be compared with those of a patient-control group who were not matched with survivors.
The work being done through the Appalachia Cancer Network should provide insights into issues relevant to other rural low-income communities in the United States, said a number of researchers involved with the initiative, who stressed that the real issues are poverty, lack of education, and lack of access to health care. In addition, as Rubio pointed out, "a lot of what were learning from our cancer experience should be translatable to other chronic diseases."
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