Running head: CHRONIC KIDNEY DISEASE 1 Chronic Kidney Disease: Problems, Perceptions, and Strategies for Intervention David Brown Walden University HLTH 4900, Section 2, Capstone November 16, 2013 Instructor: Dr. Jody Early CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 2 Abstract Chronic kidney disease is considered one of the most significant health issues affecting morbidity and mortality and contributes heavily to the state of global health. Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are chronic illnesses that have a dramatic impact on the cost of health care delivery in the United States. Early detection and intervention are critical to the long-term prognosis of this patient population; however, a health disparity exists because not everyone who is at risk for CKD has access to resources for screening and treatment. One of the goals of community-level and national programs is to create parity of care by focusing attention on marginalized communities that are at a statistically higher risk for CKD. The global impact of CKD and ESRD is significant because long-term survival depends on expensive technology and many regions of the world lack the resources needed to treat this disease. Health behavior and culture are known contributors to the long-term survivability of the disease. Since early detection is the key, creating screening programs that target populations at greatest risk will have the highest impact, and be the most cost-effective solution to combating this chronic illness. CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 3 Chronic Kidney Disease: Problems, Perceptions, and Strategies for Intervention Chronic kidney disease (CKD) is considered one of the primary global health issues and contributes significantly to the social burden of care. CKD, along with cardiovascular disease, diabetes, chronic respiratory disease, and cancer, is a chronic illness that is classified as a noncommunicable disease (Healthy People 2020, 2013). Non-communicable diseases have a significant societal impact to domestic growth, productivity, and health care costs and are the most common cause of morbidity and premature death in the United States (Couser, Remuzzi, Mendis, & Tonelli, 2011). Chronic illnesses are also characterized by physical and emotional stressors that can become overwhelming when simultaneously coping with multiple comorbidities (Moulton, 2008). Although the World Health Assembly has determined that noncommunicable diseases contribute heavily to the state of global health, they concede that public health policy can dramatically affect patient morbidity and mortality (Couser et al., 2011). CKD is a public health threat that is on the rise and will likely not slow without deliberate intervention. This literature review will describe the impact that chronic kidney disease and end-stage renal disease have on the global burden of care, as well as detail the issues that contribute to health care disparities affecting this patient population. Factors that affect morbidity and mortality will also be discussed and a solution will be presented that has the potential to reduce the health system burden and improve the prognosis of many who suffer from this chronic disease. Chronic Kidney Disease Statistics and Epidemiological Data The impact of chronic kidney disease and end-stage renal disease (ESRD) on the federal Medicare budget is staggering. In 2008, CKD cost $60 billion and ESRD totaled $39.5 billion, which was 27% of the annual Medicare budget (Rettig, 2011). Recently, studies have reported that approximately 26 million Americans have some degree of CKD (Navaneethan, Aloudat, & CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 4 Singh, 2008). Only 5% of the people in the most treatable early stages of CKD are aware they have the disease, and almost 50% of those in stage 4 remain unaware unless diagnosed with a comorbid condition such as hypertension or diabetes (Couser et al., 2011). As with many illnesses, prevention and wellness programs that offer CKD screening can improve long-term outcomes. Prevention and Wellness Strategies for At-Risk Populations Prevention and wellness strategies do much for mitigating the physiologic damage from CKD, and can extend the productivity and mortality within this patient population. The greatest benefits are realized when detection and intervention occur early in the disease cycle; however, limiting factors such as genetic, environmental, and social barriers interfere with efforts to deploy prevention and wellness strategies that can also screen for health issues (Pearson, 2008). Although CKD is an illness that affects all cultural, geopolitical, and socioeconomic classes, not all groups have the same clinical outcomes. Native Americans, Asian and Pacific Islanders, and Hispanics have a greater likelihood of progressing to ESRD, and African Americans are four times more likely than Caucasians to suffer renal failure requiring a kidney transplant (National Medical Association, n.d.). The data indicates that a significant disparity exists between Caucasians and other ethnic groups in the diagnosis and treatment of CKD. Evaluative and preventative strategies are a part of high quality health care delivery, and involve interventions that incorporate a diet plan, exercise routine, and medication protocol. Intervention strategies should be tailored to the particular community since each of the disparate groups has ethnic and cultural differences that must be factored to ensure interventional plan compliance. The Impact of Quality Health Care Delivery on CKD CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 5 High quality health care delivery can have a dramatic impact on the morbidity and mortality of people suffering from CKD. A study conducted by the National Kidney FoundationKidney Disease Outcomes Quality Initiatives has proven that hospitalizations are reduced, and mortality is improved if patients are referred to a nephrologist within one month of new onset CKD (Navaneethan et al., 2008). This study also discovered that individuals were more likely to be delayed in getting a referral if they were part of a minority, uninsured, less educated, or elderly. Access to service, proper screening, and appropriate follow-through are challenges that must be addressed if this disparity is to be eliminated. Evaluation and comprehensive counseling on social and environmental factors that negatively impact health are important acute interventions, and long-term health benefits are seen when early referral to a nephrologist and access to follow-up care are provided (Collins, Gilbertson, Snyder, Chen, & Foley, 2010). Currently, numerous programs exist that focus on high-risk populations and are designed to provide access to screening and follow-up care. The National Kidney Foundation (2013) sponsors KEEP Healthy, which is an extension of their Kidney Early Evaluation Program (KEEP) and brings a nationally sponsored, community-based initiative designed to screen and educate in regions that have statistically higher CKD populations. The Kidney Care Prevention Program (KCPP) is a regional community-based program in North Carolina that staff trained kidney care coordinators and educators who can intervene early in the disease process, and can offer support through early-stage CKD intervention and management (Harward & Falk, 2008). These are only two examples of community-based programs designed to provide individuals with the best chance at early detection and intervention. Many such programs exist, and more are being offered as federal funding becomes available. The Global Impact of CKD CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 6 Although the impact of CKD on the United States and most developed countries is significant, it is much worse in less developed countries. Screening programs are essential for early detection, but many areas of the world lack the infrastructure to be able to offer these services. Limited access to care and technology, poor living conditions and diet, and an inadequate supply of pharmaceuticals results in rapid conversion from CKD to ESRD, which is quickly followed by death (Couser et al., 2011). When CKD progresses to ESRD, the only cure is a kidney transplant. Renal replacement therapy, which is also known as hemodialysis, can be used as a bridge to transplant. There are 2 million people currently on hemodialysis worldwide, which constitutes only 12% of the global CKD population, and nearly all of them are treated in just five countries, including the United States, Japan, Germany, Brazil, and Italy (Couser et al., 2011). This means that 88% of the world population does not have a bridge to transplant, nor do they have access to renal transplantation surgery. When viewed from this perspective, it becomes clear just how devastating a diagnosis of CKD can be to most of the world’s population. Health Behavior and CKD Health behavior plays a significant role in an individual’s ability to cope with and manage chronic illness. Health behavior is so important in disease management that many health behavior models have been created in an effort to understand the link. One of the oldest health behavior theories is the Health Belief Model (HBM). The HBM asserts that people have an inherent readiness to act, which is built from life experiences, self efficacy, the perception of vulnerability to a given health problem, the severity of the issue, and the barriers and benefits to taking positive action (Williams, Manias, Liew, Gock, & Gorelik, 2012). Life experiences fall in the category of mediating factors, which also includes demographics, level of education, structural, and social variables. It is theorized that mediating factors that greatly impact CKD are CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 7 primary causes of the current health disparity (Williams et al., 2012). Recognizing these variables and creating practices that mitigate them are the keys to creating health parity across the different CKD population groups. Culture can also affect health behavior and should be considered when creating screening and intervention programs. Culture and CKD An individual’s culture influences their perspectives on health and wellness, which can subsequently affect how well they manage their disease. One of the challenges with managing patient populations that have a high incidence of undiagnosed and undertreated CKD is that they tend to be culturally and linguistically diverse (CALD) groups (Williams et al., 2012). Chronic disorders such as CKD, diabetes, and cardiovascular disease require a strict adherence to lifestyle modification instructions and medication protocols. Limited health literacy, poor cognition, or a language barrier inhibits effective communication and has been shown to result in poor health outcomes (Norris & Nissenson, 2008). These communities are also at risk because they cannot afford health care, have decreased access the health system, and have little or no access to screening and testing facilities (Rettig, Norris, & Nissenson, 2008). These communities often shun modern health services because historically conditioned biases have created in an inability to trust or feel safe in contemporary health care delivery centers (Rettig et al., 2008). Establishing community-based health clinics that are staffed and managed by lay health advisors, especially in regions that have heavy racial and ethnic populations, will not only create community buy-in, but also create agents of change. Lay health advisors are community members who have a natural tendency to help, and are provided training and support so they can assist and advise others in their community on various health issues (Pullen-Smith & Plescia, 2008). Overcoming health care disparities will require lay health advisors to be recruited from CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 8 within the affected patient population. Recruiting members from within the community has resulted in improved attitudes as community members gain control over their own health issues. The Role of Technology in Treating CKD Patients with CKD and ESRD rely heavily on technology to manage their disease process. Point-of-care testing that can measure creatinine, glucose, albumin, and other critical blood values allows clinics to mobilize and bring much needed health care into the community instead of waiting for members of at-risk groups to be proactive and seek screening centers (Harward & Falk, 2008). The mobile centers have been instrumental in finding individuals who are in the early stages of CKD and respond best to early intervention. When CKD progresses to ESRD, the person must learn to embrace the technology that will sustain his or her life until renal transplantation can be offered. Being tethered to a dialysis machine several days a week for six hours at a time, constant testing, and living with a dialysis catheter or fistula create a technological burden that can be overwhelming. Embracing technology is not easy for patients to do because machine dependency runs contrary to the freedom and autonomy that the individual previously enjoyed. Acculturation occurs when the patient conforms to behavior patterns and routines that are needed in order to exist indefinitely on machine dependency (Harward & Falk, 2008). At the point of acculturation, the patient fully embraces the new technology and accepts it as an integral part of life. Legal and Ethical Issues Impacting CKD Besides technology concerns, there are many legal and ethical issues surrounding the condition of CKD that can impact an individual’s ability to obtain the necessary treatment. In October 1972, the federal government passed the Social Security Amendments, which extended Medicare coverage to the disabled, and officially recognized ESRD as a disability (Vassalotti, CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 9 Gracz-Weinstein, Gannon, & Brown, 2006). In 2009, the American Recovery and Reinvestment Act (ARRA) shifted the focus from reactive and therapeutic intervention, to a proactive and preventative model (Menzin et al., 2011). Currently, instead of waiting and treating the terminal disease of ESRD, which is ineffective, inefficient, and costly, clinicians are screening for CKD in at-risk populations so that appropriate intervention can occur at a stage where the disease process can be halted or even reversed. There are other federal programs that help those suffering from CKD. A second example of a public policy that focuses on active intervention is the Medicare Improvements for Patients and Providers Act of 2008 (MIPPA), which provides funding to education programs for individuals with stage 4 CKD (Menzin et al., 2011). The MIPPA has proven successful at providing funding that creates highly effective targeted education. The Interdisciplinary Team’s Approach to Treating CKD The process of screening, treatment, and education need the involvement from many disciplines within health care. An interdisciplinary team approach can be the best way to manage complex illnesses such as CKD. Working within culturally and linguistically diverse communities require teams that can provide a range of health care needs, facilitate communication, and serve as patient advocates and representatives. Interdisciplinary teams typically include physicians, technicians, linguists, social workers and case managers, and community advocates, among others (Sinasac, 2012). These teams must also collaborate with community agencies, which can enhance the effectiveness of health promotion efforts (Sinasac, 2012). Public health strategies can also include non-traditional groups such as community service organizations, American Indian tribes, boys and girls clubs, and faith-based organizations, which can penetrate deeper into the communities and reach individuals where they CHRONIC KIDNEY DISEASE: PROBLEMS, PERCEPTIONS, AND STRATEGIES FOR INTERVENTION 10 live, work, play, eat, and pray (Pullen-Smith & Plescia, 2008). Interdisciplinary teams allow for the breadth of services needed to make a significant impact on CKD screening and intervention. The Scholar-Practitioner’s Role in Treating CKD My role as a scholar-practitioner is to be aware of social disparities and endeavor to correct observed societal imbalances. CKD is considered one of the most significant health care disparities that exist in America today. As a scholar-practitioner, I must be a leader and advocate for positive social change within my community. Becoming involved with organizations such as the National Kidney Foundation’s KEEP Healthy program, the Minority Intervention and Kidney Education (MIKE) program, or local organizations like the Kidney Care Prevention Program (KCPP) are ways that I can influence social change as it relates to CKD and ESRD. Opportunities exist for me to become a trained kidney care coordinator/educator and lead efforts to promote health and wellness activities (Harward & Falk, 2008). Being a scholar-practitioner, I can be involved with identifying a need and targeting the appropriate patient populations by researching health status statistics and epidemiology studies, developing focus groups, assessing social marketing strategies, and analyzing current evidence-based practices to be used in creating new public health policies (Sinasac, 2012). As a scholar-practitioner, a worthy goal would be to spearhead the formation of a new organization that brings health care services to minority communities, socioeconomically depressed people, and the uninsured and underinsured. Another way I can have an impact in my community and make a positive social change is to involve myself with an existing organization whose goal is to eliminate racial and ethnic health disparities for chronic illnesses such as CKD. Through these types of actions, I can fully embrace the role of scholar-practitioner and become an agent of positive social change.