Chronic Illness: Promoting Cardiovascular Health in Socioeconomically Austere Rural Areas
Debra K. Moser
About 60 million Americans (20% of the population) live in rural areas, and sadly, the cardiovascular health of rural America is in crisis (Knudson, Meit, & Popat, 2014). In most rural areas of the country, particularly in the South, mortality rates, major acute cardiac event rates, and the prevalence and incidence of cardiovascular disease (CVD) and associated CVD risk factors are substantially and persistently higher than in nonrural areas (Kulshreshtha, Goyal, Dabhadkar, Veledar, & Vaccarino, 2014; McConnell et al., 2010; O’Connor & Wellenius, 2012). Although there is little intervention research in rural areas in the United States to improve cardiovascular health (Gruca, Pyo, & Nelson, 2016), there have been a few successful CVD risk reduction studies (Khare, Koch, Zimmermann, Moehring, & Geller, 2014; Tideman et al., 2014). Although initially effective in most cases, the changes at the individual level have not been maintained once the research is over, and the interventions have not been sustained locally or at the community level (Khare et al., 2014).
Failure to see a sustained effect from CVD risk reduction efforts in rural areas is common, particularly when there are no provisions by the research team for continuing an effective intervention and the support it entails. Participants often feel abandoned when researchers withdraw an intervention that has successfully engaged them (Fletcher, Burley, Thomas, & Mitchell, 2014). Such participants are less likely to maintain changes in CVD risk factors that they have made, and to participate in future studies. At times, the entire rural community develops feelings of mistrust toward researchers, to the extent that participation by the entire community in studies is decreased (Mudd-Martin et al., 2014).
For CVD risk reduction research to have any long-term effect in rural communities, clearly, its effects must be maintained after the researchers leave, and the intervention must be disseminated and used in other parts of the community, the region, the state, and even the nation. Policy changes from small local initiatives to widespread state policy implementation can have an appreciable effect on sustaining interventions from successful research projects, and ultimately reducing the marked CVD disparities seen in rural America. The purpose of this chapter is to describe a group of community-based CVD risk reduction interventions and the efforts made to sustain the intervention and its effects through a variety of policy changes. This work was (and is being) conducted in central Appalachian Kentucky, one of the most socioeconomically austere rural areas in the country with some of the most unhealthy counties. Measures of quality adjusted life expectancy (a composite measure of quality of life and mortality) put Kentucky in the bottom five of the United States based on the poor quality of life reported by residents and their shorter life expectancy (Jia, Zack, & Thompson, 2011).
Cardiovascular Health of the Region
CVD, a chronic condition, remains the number one killer of people in the United States (Mozaffarian et al., 2016; Roger et al., 2012), but there are marked disparities in CVD and CVD risk factor prevalence throughout the nation (Appalachian Regional Commission, 2016; Chowdhury et al., 2016; Go et al., 2013; Liburd, Giles, & Mensah, 2006; Mensah, Mokdad, Ford, Greenlund, & Croft, 2005). Individuals who reside in rural areas have disproportionately higher rates of CVD risk factors, CVD, and CVD mortality (Kulshreshtha et al., 2014; McConnell et al., 2010; O’Connor & Wellenius, 2012; United States Census Bureau, n.d.). Rural Appalachia has higher rates of heart disease mortality than any other area of the nation for all race/ethnicities, both genders, and all age groups (Halverson, Barnett, & Casper, 2002). Of all of Appalachia, Appalachian Kentucky has the worst cardiovascular health in the 13-state Appalachian region, and has a long legacy of substantial, unaddressed CVD health disparities (City-Data.Com, 2014; Kentucky Institute of Medicine, 2007).
The Kentucky Institute of Medicine provides objective data about risk factors and disease outcomes at the county level, which is heavily weighted by CVD risk factors and mortality. Of the 120 counties in Kentucky, the 15 least healthy counties in the state are located in the Appalachian region of Kentucky, and the county with the worst mortality rate in the entire nation is in this region.
Distressed rural environments are characterized by poor access to preventive health care, inadequate insurance, persistent poverty, and low educational attainment, along with reduced access to healthy foods and areas in which to engage in physical activity, all of which contribute to CVD health disparities (Amarasinghe, D’Souza, Brown, Oh, & Borisova, 2009; Halverson & Bischak, 2008, 2010, 2012; Barker et al., 2010). Appalachian Kentucky is noted for having the worst socioeconomic and health conditions in the United States (Appalachian Community Fund, 2014). High rates of persistent poverty and unemployment, low educational level, poor access to health care, and high rates of un- or underin-sured individuals are characteristic of the region even after the Affordable Care Act (Kentucky Institute of Medicine, 2007; United States Department of Agriculture [USDA], 2012). Other factors in the community social environment and infrastructure, such as lack of public transportation, food deserts, limited community services, and shortages of health care providers, further exacerbate the health challenges and set the stage for extremely poor cardiovascular health (Kentucky Institute of Medicine, 2007).
Twenty-nine of the 100 poorest and most distressed counties in all of America are in Kentucky. “Distressed” refers to the lowest 10% of the nation’s counties in terms of unemployment, per capita income, and poverty. For fiscal year 2012, 41 counties in Appalachian Kentucky were classified as economically distressed (rated on a scale ranging from the best = “attainment,” next best = “competitive,” followed by “transitional,” then “at risk,” and the worst = “distressed”), 7 are “at risk,” and the remainder are “transitional” (Appalachian Regional Commission, 2012). No county in Appalachian Kentucky was “attainment” or “competitive.” Almost half of the distressed counties in all of the 13-state region that contains Appalachia are in Eastern Kentucky (Appalachian Regional Commission, 2012). In addition, they are designated as persistent-poverty counties by the USDA based on the presence of poverty in more than 20% of the residents in the past four censuses (Appalachian Regional Commission, 2008; USDA, 2012). Poor socioeconomic status is associated with high rates of CVD risk factors and CVD (Amarasinghe, D’Souza, Brown, Oh, & Borisova, 2009; Appalachian Regional Commission, 2008; Borak, Salipante-Zaidel, Slade, & Fields, 2012; Liburd et al., 2006; Shaw, Theis, Self-Brown, Roblin, & Barker, 2016), and distressed counties have higher rates of heart disease mortality than nondistressed (Appalachian Regional Commission, 2008; Halverson et al., 2002; Mensah et al., 2005).
Low Educational Attainment
Appalachian Kentucky is ranked 50th (worst) with regard to the number of illiterate adults and has the lowest rates of educational attainment in America (Appalachian Regional Commission, 2016). Low educational attainment contributes to the austerity of resources in this area. Within rural Kentucky, 51.9% of the working-age population met criteria for low literacy, compared to the state rate of 38%. Low levels of education are (a) a risk factor for CVD, (b) associated with a higher risk for all modifiable CVD risk factors (Strand & Tverdal, 2004, 2006), and (c) associated with poorer uptake of CVD-reducing recommendations (Strand & Tverdal, 2006).
Poor Access to Health Care
In Appalachian Kentucky, 50% of counties have only one hospital and 20% have none. The areas targeted by our projects are rural, low-income counties defined as medically underserved areas and/or federally designated health professions shortage areas. Many counties have no health care providers, and most have fewer than half the rate of what is considered acceptable (Kentucky Institute of Medicine, 2007). About 28% of Appalachian Kentucky report that cost is a barrier to health care, compared to 12.8% nationwide (Hacker, 2008). High numbers of residents in Appalachian Kentucky (38.4%, the highest rate in Kentucky) report fair or poor health, no visit to a health professional in the prior year, and no confidence in getting needed health care services (Hacker, 2008). In Appalachian Kentucky, 15% to 21% of individuals lack health care coverage, while another 35% of the Appalachian Kentucky population have Medicare (Social Security Administration, 2014). At least 80% of counties experience service shortages. Lack of health insurance is associated with lower use of preventive services and higher rates of hospitalization for CVD.
Cardiovascular Disease Health Disparities
Appalachian Kentucky is in the “heart and stroke belt” of the United States, so named because of the disproportionately higher rates of heart disease and stroke, and related risk factors (Appalachian Regional Commission, 2008; Department for Public Health, 2014; Keyserling et al., 2016). It has the highest number of heart disease related deaths in the state, with an age-adjusted rate double that of that state overall (Kentucky Institute of Medicine, 2007). About 7.8% to 8.6% (depending on county) of Appalachian Kentucky adults report having coronary heart disease compared to 4.2% nationwide; 7.7% to 10.1% report having had a heart attack compared to 4.4% nationwide (Department for Public Health, 2014; Hacker, 2008). Appalachian Kentucky is in the top first percentile for poor CVD outcomes (Kentucky Department of Public Health, 2009; Kulshreshtha et al., 2014; Lloyd-Jones et al., 2009; Writing Group Members et al., 2016).
The Kentucky Behavioral Risk Factor Surveillance System (BRFSS) and others have noted disproportionately high levels of CVD risk factors in Kentucky and a substantially higher level of multiple CVD comorbidities (Rugg, Bailey, & Browning, 2008). About 44% of Appalachian adults report having high cholesterol levels (Department for Public Health, 2014; Hacker, 2008). People in Appalachian Kentucky report the highest rates of activity limitations due to health problems (Department for Public Health, 2014). About 81% of adults in the area report eating less than five fruits and vegetables per day, and 70.5% do not receive the recommended amount of moderate physical activity per week, while the obesity rate in the area has skyrocketed and more than 71% of adults are overweight or obese (Department for Public Health, 2014).
To summarize, rural Appalachian Kentucky residents face enormous health challenges. Life in these underserved and economically distressed environments contributes to marked CVD health disparities. These rural areas are among the highest for prevalence of multiple CVD risk factors in the 50 states. Given the bleak economic situation in these areas, preventative cardiovascular care has not been a priority. Prevention of CVD, however, must be integrated into these rural communities to improve the CVD risk profile of the population and to reduce the incidence of CVD.
IMPROVING THE CARDIOVASCULAR HEALTH OF APPALACHIA
Improving Cardiovascular Disease Outcomes
Implementation of lifestyle CVD risk factor reduction interventions is effective in reducing CVD risk (Appel et al., 2003, 2006; Kottke et al., 2009; L. F. Lien et al., 2007; Lin et al., 2007; Maruthur, Wang, & Appel, 2009; Mensah & Brown, 2007; Stampfer, Hu, Manson, Rimm, & Willett, 2000; Yusuf et al., 2004). In a groundbreaking study, the INTERHEART investigators demonstrated that nine preventable risk factors explained 90% and 94% of the incidence of myocardial infarction in men and women, respectively, independent of age or culture (Yusuf et al., 2004). Simply improving three risk factors led to an 80% reduction in risk of a cardiac event. These results were similar to those from the Nurses’ Health Study, which demonstrated in a prospective cohort study that 75% of the risk for myocardial infarction or stroke would be removed by adherence to lifestyle guidelines (Stampfer et al., 2000). Others have provided equally compelling data demonstrating the power of lifestyle risk modification to prevent events versus “perfect” treatment of a person after an event has occurred (Kottke et al., 2009). Management of CVD risk factors before an event could prevent or postpone 33% of deaths, compared to prevention of only 8% of deaths if “perfect care” was used during an acute event. These data provide strong support for the importance of lifestyle change (i.e., CVD risk factor management) in preventing CVD and further events.
Despite the evidence that lifestyle interventions to reduce CVD risk are successful, they are not widely used in clinical practice, and their use is extremely rare in distressed, underserved rural areas. Moreover, we (Bentley, De Jong, Moser, & Peden, 2005; Dekker, Moser, Peden, & Lennie, 2012; Welsh et al., 2012; Wu, Corley, Lennie, & Moser, 2012) and others (Au et al., 2010; Schoenberg, Bardach, Manchikanti, & Goodenow, 2011) have shown that lifestyle interventions must take into account the unique needs and strengths of individuals being targeted to be effective, must consider the limitations imposed by the environment, and must have a self-care focus in order for individuals to be able to maintain change.
In developing and testing an intervention to target a specific population, particularly one with marked health disparities, it is crucial to develop an intervention relevant to the individuals and community being targeted. Although this seems obvious, it is common for clinicians and investigators to impose interventions or strategies without input from the targeted population. Moreover, for an intervention to be sustained it is critical that buy-in be received from the community before beginning a CVD risk reduction program.
Our investigative team used community-engaged research principles to develop, test, evaluate, disseminate, and sustain our intervention: the HeartHealth intervention. These principles include developing strong community–academic partnerships, engendering equitable power and responsibility for community members, working on capacity building, and developing effective dissemination of plans (Ahmed & Palermo, 2010). In introductory work, we assembled a community advisory board, and conducted multiple focus groups that consisted of local lay people, health care providers, and community leaders to identify strengths and barriers that required attention in order to make the intervention appropriate for the population, and to address the relevant barriers to self-care (Mudd-Martin et al., 2014).
Rural Strengths and Barriers to CVD Risk Reduction
In addition to the factors outlined earlier (poverty, low education, lack of access to health care), there are other environmental barriers to CVD risk reduction in rural, distressed areas that we considered in developing the HeartHealth intervention. With regard to the environment, rural Appalachian Kentucky has multiple “food deserts,” areas where affordable, fresh, healthy food is not available (Beaulac, Kristjansson, & Cummins, 2009; The Conservation Fund, 2014; Thomson, 2011). Food deserts and poverty go hand in hand, and contribute to the negative CVD risk profile in these rural areas (Beaulac et al., 2009; The Conservation Fund, 2014; Thomson, 2011). Participants in our focus groups stated that it was often difficult to obtain fresh fruit and vegetables or healthier food options given the lack of easily accessible markets that carried such items. Another environmental concern is lack of access to safe places to exercise. Participants in our focus groups stated this concern, and the concern that the changing job situation (move from physically demanding coal mining, logging, and agricultural jobs to service jobs) has produced a sedentary generation. These themes are mirrored in studies by others (Schoenberg et al., 2011; Schoenberg, Hatcher, & Dignan, 2008).
Community members in our focus groups were concerned about their own cardiovascular health and the cardiovascular health of the entire community (Mudd-Martin et al., 2014). Improving CVD risk was a major priority. A common theme expressed to us was growing concern for the health of the community after participants heard in news reports that rural Kentuckians were the most obese, inactive, and unhealthy group in the nation. Accompanying this concern was anxiety over the seemingly overwhelming nature of the problem and lack of knowledge and resources (Mudd-Martin et al., 2014). Lack of motivation to change given a fatalistic attitude about chronic illness has been reported as a barrier to preventative behavior change (Deskins et al., 2006; Mudd-Martin et al., 2014). Preventative care has not been a priority for residents who have financial barriers to receiving health care (Deskins et al., 2006; Strickland & Strickland, 1996). Lack of knowledge about CVD risk factors or CVD prevention has been reported by others (Deskins et al., 2006; Schoenberg et al., 2008, 2011). Thus, a self-care intervention is ideal to address these concerns.
We and others (Reilly et al., 2016) have found that a major barrier to CVD risk reduction in the area is distrust of health care providers, who are largely not from the community, and who (as stated by several participants in the focus groups), “have no idea how hard it is to change your life, who don’t understand or care about this area, and who just say ‘lose weight’ and give no advice about how to do it.” Participants in our studies and in studies by others (Koniak-Griffin et al., 2015; Reilly et al., 2016; Tian et al., 2015) who were recruited by, and received the intervention from, community health workers (also known as indigenous health workers) were highly pleased with this approach, very accepting, and became highly engaged in the studies, and the community health workers were highly effective in promoting lifestyle change.
Another important barrier to CVD risk reduction in rural areas is the high rate of poor mental health, specifically depressive symptoms. Advisory board members noted the problem of poor mental health in the community. This is an important observation because depressive symptoms (a) negatively impact behavior change (Leiferman & Pheley, 2006) and (b) are associated with development of CVD risk factors, CVD, and CVD mortality (Rozanski, Blumenthal, Davidson, Saab, & Kubzansky, 2005).
Although distressed rural areas are commonly portrayed negatively, people living in such communities have a number of strengths that position them to undertake the changes needed to improve their health. Strengths include a strong tradition of community mobilization when awareness of a local problem occurs, and the potential for “home-grown change” (Schoenberg et al., 2008). People are noted for their sense of neighborliness and concern for neighbors, friends, family, and community (Lohri-Posey, 2006; Schoenberg et al., 2008).
Advisory board and focus group members talked about their concern for the health of their community and their willingness to promote lifestyle change in themselves, their family, friends, and community, if necessary resources are available (Mudd-Martin et al., 2014). They identified heart disease as a major issue in the community to tackle. They wanted to be provided with skills and knowledge to reduce CVD risk factors and improve their well-being given the challenges in the community. Most felt that reliance on a health care provider alone to improve one’s health would not be effective and that individuals must take responsibility for their own health. Given this belief, most individuals still felt that they did not have the skills or knowledge needed to properly improve their cardiovascular health. For that reason, the idea of engaging in group learning sessions that promoted self-care and “empowered” them to take charge of their health in a group environment was appealing. In developing the HeartHealth intervention, we developed components to address barriers to CVD risk reduction and to take advantage of strengths in the region.
To summarize, individuals living in socioeconomically distressed rural areas are subject to startling disparities in CVD risk factors and CVD expression. For example, Perry County (one of our target communities) in rural Appalachian Kentucky has the worst life expectancy in the entire United States, due largely to excess CVD mortality—in fact, life expectancy there is worse than in Vietnam, Russia, and many other developing countries. Despite these substantial CVD disparities, very little research has been done promoting CVD risk reduction in austere rural areas using a self-care approach to reducing multiple, comorbid CVD risk factors (Hayes, Greenlund, Denny, Croft, & Keenan, 2005).
Although the notion of self-care and its importance to chronic disease management is gaining acceptance in the United States, the reality of self-care among people with chronic conditions is bleak. We have demonstrated, in individuals with heart disease and heart failure, that the vast majority do not practice effective self-care, most providers do not teach effective self-care, and that most individuals are not aware of the need for self-care (Moser et al., 2012; Moser, Doering, & Chung, 2005; Riegel et al., 2009; Riegel, Moser, Powell, Rector, & Havranek, 2006). Our project is highly relevant to rural Kentucky because the intervention is based on promotion of effective self-care in a population with the need for multiple self-care activities (e.g., eating a heart-healthy diet, getting exercise, controlling weight, managing diabetes and hypertension, taking medications if prescribed), who must contend with poor access to health care, long distances to travel to care providers, and lack of preventative services to support CVD risk reduction efforts.
Finally, we and others have demonstrated that depressive symptoms have a substantial and negative impact on (a) self-care activities, including adherence and lifestyle behavior changes (Romanelli, Fauerbach, Bush, & Ziegelstein, 2002; Rozanski et al., 2005; Ziegelstein et al., 2000); and (b) on CVD outcomes (Doering et al., 2010; Rozanski et al., 2005; Song et al., 2010). Failure to address depressive symptoms when attempting to promote adoption of CVD risk reduction sets the stage for failure of the intervention (Jaarsma et al., 2010; McGrady, McGinnis, Badenhop, Bentle, & Rajput, 2009), yet management of depressive symptoms as part of CVD risk reduction interventions is rare. In the populations targeted, where the prevalence of depressive symptoms is high (Moriarty, Zack, Holt, Chapman, & Safran, 2009), it is essential to include management of depressive symptoms. Thus, we integrated depressive symptom management into the intervention.
Description of the HeartHealth Intervention
Based on extensive input from lay people and health care providers in the community, the prevalence of multiple CVD risk factors, the distressed nature of the environment, the barriers to CVD risk reduction, and the strengths inherent in the rural community, we designed, tested, and demonstrated the feasibility and effectiveness of the HeartHealth intervention. The HeartHealth intervention consists of group-based education and counseling delivered using principles known to promote behavior change: use of motivation interviewing; active engagement of participants during all stages of delivery; skills teaching; and individualization of strategies to each participant’s specific risk factors and barriers. The intervention was delivered by community health workers extensively trained in all aspects relevant to conceptual underpinnings, delivery, content, and skills taught in the intervention. Community health workers are an integral aspect of the study, given their efficiency, acceptability by the communities, and effectiveness (Adair et al., 2012; Battaglia et al., 2012; Reynolds et al., 2012). These workers are employed from the affected areas and trained to act as liaisons for their communities. They are trusted members of the community, and have access to some of the most distressed areas, well beyond the access of researchers and clinicians. Potential participants usually are willing to take part in the study and commit to finishing once they discuss the project with community health workers.
The following six interactive modules are delivered to participants: (a) principles of self-care and CVD risk reduction; (b) nutrition (includes portion control, eating a diet high in fruits and vegetable and whole grains, reducing saturated and trans fats, reducing sodium intake, reducing total fat intake, clearing up the “good fat vs. bad fat” issue); (c) physical activity; (d) depression control and stress reduction; (e) managing multiple comorbid risk factors; and (f) smoking cessation and/or medication adherence. These modules were delivered over a 6- to 8-week period (there is variability to account for canceled sessions due to snow or other bad weather conditions) by registered nurse community health workers who were trained extensively by our team. The sessions were delivered every 2 weeks to groups of 10 people over a 2-hour period using the principles outlined in Tables 15.1 and 15.2.
TABLE 15.1 Barriers to Successful CVD Risk Reduction in Rural Appalachia and How the HeartHealth Intervention Addresses Them