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The Center for Managing Chronic Disease conducts research and demonstration that aim to build the capacity of individuals, families, communities, and health care systems to effectively prevent and manage chronic disease. It is a worldwide collaboration of researchers and interventionists who focus their work on management of heart disease, diabetes, respiratory disease, breast cancer, allergy, Alzheimer's disease, and factors associated with obesity. The Center pursues its mission nationally and internationally collaborating with colleagues who are doing innovative work related to the social, behavioral, environmental and clinical aspects of chronic disease control. The Center fosters these collaborations to create new approaches to disease management and also adapts projects and programs successful in one area for use in another. We disseminate successful interventions so they reach the largest number of people, in particular, low-income families, minorities, children, older adults and women. While no one intervention is likely to change the picture of chronic disease, the Center believes that careful research of an array of solutions for individuals, families, clinicians, and systems will evolve into what collectively can achieve optimum disease management and control.
Mission of the Center
We aim to build the capacity for effective chronic disease prevention and management. Our focus is people at risk with emphasis on the most vulnerable and those who can help them—families, clinicians, communities, and systems. We conduct innovative research and disseminate results that can help to change policy and practice.
We pursue our mission by bringing together national and international experts in chronic conditions—primarily heart disease, respiratory disease, diabetes, breast cancer, Alzheimer's disease, allergy and factors associated with obesity—who are doing innovative work related to the social, behavioral, environmental and clinical aspects of disease management. We foster collaborations that create new approaches to disease control and adapt successful projects and programs for use in new places. We disseminate proven interventions so they reach the largest number of people, in particular, low-income families, minority groups, children, older adults, and women.
While no one intervention is likely to solve all the problems that accompany chronic disease, we believe that careful research of an array of solutions can lead to potential policies and practices that collectively can achieve optimum health and well-being.
Over one-half of Americans have a chronic condition. Two thirds of older adults live with one or more chronic diseases. Heart disease, cancer, and respiratory disease account for 50% of premature deaths worldwide even where infectious diseases are rampant. On every measure of chronic disease, low income minority people suffer more, especially the elderly and children. By 2025, almost 20% of the U.S. population will be elderly. By 2050, 50% of the American population will comprise minority people. Around the globe, widening economic disparities are producing increasingly greater illness burden for the poor.
Changing (at affordable cost) the structures and systems that deter those with chronic disease from maintaining optimal health and functioning requires putting people at the center of solutions. Although much work has been undertaken to examine reorganizing, financing, and improving the quality of health services, a fundamental element has been overlooked. The critical missing component in health system change efforts is focus on the person who actually manages disease day to day. The members of his/her family and the home community, while frequently mentioned, are also largely ignored in practice. Change strategies, programs, and policies that neglect fully activating the management potential of the person with the chronic condition are doomed to fail.
A New Model to Address the Need
The Center for Managing Chronic Disease seeks to become the premier entity developing innovations to enhance the health and illness management of older adults and disadvantaged children with chronic disease. The new Center will fill a critical gap by pioneering means by which structures and systems can harness the power of people with chronic illness to control the effects of disease.
The mission of the new Center for Managing Chronic Disease quite simply is to put the people who live with disease on a day-to-day basis at the center of innovative efforts to control illness, promote optimum functioning, and enhance quality of life. The Center will undertake projects that describe social, behavioral, and clinical factors associated with managing a chronic disease, and evaluate interventions for people, their families, and communities designed to improve management and outcomes. The special interest of the Center is the interaction of a person with his or her clinician, the role of the family in disease management, and the way in which communities can support individuals and families. Faculty and staff creating the new Center have particular expertise in asthma, heart disease, obesity, diabetes, Alzheimer's, and breast cancer. The Center will engage a large network of internationally known experts from a wide range of disciplines in development, pilot testing, assessment, and dissemination of innovations holding promise for disease control and widespread utilization.
University of Michigan representatives participating in the Center are drawn from across the campus particularly the schools of public health, medicine, nursing, and pharmacy. Center Associates, worldwide leaders in health innovation, are being selected from other universities in the United States and around the globe. A Medical Advisory group will provide advice and consultation concerning clinical aspects of Center projects. A National Advisory Committee representing key constituencies and stakeholders in disease control will advise regarding Center priorities, promising innovations, and dissemination of results. The National Advisory Committee will comprise representatives of elderly and of disadvantaged populations who will ensure relevance, feasibility, and appropriateness of the Center's undertakings.
Core personnel are being organized into teams for carrying out tasks with teams varying in membership according to expertise needed in a given project. An Executive Director and Scientific Administrator ensure integration of Center personnel and activities. Center teams are project development and design; data collection; data analysis; dissemination; training; and consultation. Coordination within the Center occurs through regular meetings for team leaders, exchange of pertinent information and special meetings, electronic communications, and project-specific bulletins. Involvement of Center associates is achieved through both electronic conferencing and face-to-face meetings. Fiscal operations and accountability are monitored by the Center's Financial Administrator.
The Potential Impact of Innovations
Evidence of positive outcomes for the individual, family, and health related systems is the Center's gold standard. Our interest in innovation for disease control stems from a long history of success by the Center's founders in assessing new ways to manage chronic illness and equal success in widespread dissemination of effective interventions. Each intervention has been designed for relatively easy introduction into the relevant delivery system or structure. These products of previous work have literally changed the nature of service delivery and the health status of the elderly and of vulnerable children. Previous work of the Center's founders include:
- Take PRIDE: A clinic based intervention for older men and women with heart disease. The first behavioral program to demonstrate reductions in symptoms and improvements in physical and psychosocial functioning for this population.
- Women Take PRIDE: A behavioral intervention for older women with heart disease to address their unique management needs and interests. It achieved weight loss, enhanced ambulation, fewer symptoms, less health care use, and is the first to demonstrate lower health care costs for this often overlooked population. It is being replicated for populations around the U.S.
- Open Airways: A program for parents and children with asthma based at their clinical sites. The first large-scale study to demonstrate improvement in symptoms and reduction in health care use for low income minority patients. It is utilized in thousands of clinics around the country.
- Open Airways for School (OAS): A school based program for low income elementary school children with asthma that reduces symptoms and enhances school grades. As a national program of the American Lung Association it is disseminated internationally and has to date reached more than a million children with asthma in the U.S. and worldwide. The Center team also pioneered OAS-Plus, a more comprehensive program for elementary schools in low income communities for children with asthma, their classmates, principals, counselors, and building personnel. It demonstrated reduced symptoms, improved grades, and reduced school absences for asthma. It is an exemplar program of the Merck Foundation being introduced into communities around the U.S.
- Physician Asthma Care Education (PACE): A brief interactive seminar for physicians that focuses on developing a combination of skills related to clinical therapies, communication techniques, and core messages for the family living with chronic disease. It is the first program to engender enhanced practices by physicians that resulted in reduced health care use and satisfaction with care of their patients with asthma. Benefits were greatest for the most vulnerable patients. The program also reduces health care costs and requires no additional time on the part of clinicians. PACE is an exemplar program of the National Heart Lung and Blood Institute and is being used across the U.S. and around the world including England, Scotland, and Australia.
Alzheimer's disease is a brain disorder named for German physician Alois Alzheimer, who first described it in 1906. Scientists have learned a great deal about Alzheimer's disease in the century since Dr. Alzheimer first drew attention to it. Today we know the following information related to Alzheimer's disease:
- It is a progressive and fatal brain disease. More than 5 million Americans now have Alzheimer's disease. Alzheimer's destroys brain cells, causing problems with memory, thinking and behavior severe enough to affect work, lifelong hobbies or social life. Alzheimer's gets worse over time, and it is fatal. Today it is the seventh-leading cause of death in the United States.
- It is the most common form of dementia, a general term for the loss of memory and other intellectual abilities serious enough to interfere with daily life. Vascular dementia, another common type, is caused by reduced blood flow to parts of the brain. In mixed dementia, Alzheimer's and vascular dementia occur together.
- It has no current cure. But treatments for symptoms, combined with the right services and support, can make life better for the millions of Americans living with Alzheimer's. We've learned most of what we know about Alzheimer's in the last 15 years. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing.
- Much of the disease burden falls on the family and loved ones who care for the person with Alzheimer's and their health is often at risk.
Asthma & Allergies
Asthma is a chronic disease that affects the airways. The airways are the tubes that carry air in and out of the lungs. If you have asthma, the inside walls of your airways are inflamed (swollen). The inflammation makes the airways very sensitive, and they tend to react strongly to things that you are allergic to, to irritants in the environment, to cold, and to infections. When the airways react, they get narrower, and less air flows through to your lung tissue. This causes symptoms like wheezing (a whistling sound when you breathe), coughing, chest tightness, and trouble breathing, especially at night and in the early morning.
When asthma symptoms become worse than usual, it is called an asthma episode or attack. During an asthma attack, muscles around the airways tighten up, making the airways narrower so less air flows through. Inflammation increases, and the airways become more swollen and even narrower. Cells in the airways may also make more mucus than usual. This extra mucus also narrows the airways. These changes make it harder to breathe.
Asthma attacks are not all the same-some are worse than others. In a severe asthma attack, the airways can close so much that not enough oxygen gets to vital organs. This condition is a medical emergency. People can die from severe asthma attacks.
Controlling asthma means patients working closely with their doctors to develop an effective therapeutic regime and monitoring the condition so as to respond quickly to signs of an attack.
If asthma is not well controlled, people are likely to have symptoms that can contribute to missed school or work. Asthma is one of the leading causes of children missing school. Asthma cannot be cured, but most people with asthma can control it so that they have few and infrequent symptoms and can live active lives. Allergies
Allergies are a specific reaction of the body's immune system to a normally harmless substance, one that does not bother most people. Allergic reactions occur to environmental substances known as allergens; these reactions are acquired, rapid, and occasionally predictable. People who have allergies often are sensitive to more than one substance. Common types of allergens include: pollens, house dust mites, mold spores, food, latex rubber, insect venom, and medicine.
Food allergies are also very prevalent. According to the Food Allergy and Anaphylaxis Network a food allergy is an immue system response to a food that the body mistakenly believes is harmful. Although an individual could be allergic to any food, such as fruits, vegetables, and meats, there are eight foods that account for 90% of all food-allergic reactions. These are: milk, egg, peanut, tree nut (walnut, cashew, etc.), fish, shellfish, soy, and wheat.
Certain allergies can be managed with medication. Researchers are becoming increasingly aware of the role of environmental factors in allergies, and are continuously evaluating ways to control environmental exposures to allergens and pollutants to prevent allergic disease. These studies offer the promise of improving the treatment and control of allergic diseases and the hope that one day allergic diseases will be preventable.
- An examination of individualized telephone counseling for women with asthma based on their level of self regulation.
- An exploration of the role and contribution of community wide coalitions to control of respiratory disease.
- An examination of an intervention to build capacity of Head Start agencies to assist families where a child has asthma.
- Evaluation of two school based methods for enhancing management of asthma by preteens in low income predominantly minority schools.
The National Institutes of Health (NIH) describes breast cancer as a type of cancer that forms in tissues of the breast, usually the ducts (tubes that carry milk to the nipple) and lobules (glands that make milk). It occurs in both men and women, although male breast cancer is rare. According to the National Cancer Institute, in the United States, breast cancer is the most common non-skin cancer and the second leading cause of cancer-related death in women. Although the breast cancer diagnosis rate has increased, the overall breast cancer death rate has dropped steadily since the early 1990s.
Studies compiled by the American Cancer Society have found the following risk factors for breast cancer:
- Personal history of breast cancer
- Family history
- Certain breast changes
- Gene changes
- Reproductive and menstrual history
Survivorship and the needed day to day disease management subsequent to an occurrence of breast cancer is an interest of Center investigators. Please review the left-hand sidebar for more information.
- The first management program for breast cancer patients post-treatment to enable them to manage ongoing psychosocial concerns and functioning.
Caregivers & Families
Caregivers play an integral role in chronic disease management because they are often responsible for the physical, emotional and financial support of a family member who is unable to care for him/herself. More than 44 million Americans serve as informal caregivers to people aged 18 years and older who live in the community and require help. The unpaid and informal care they provide is an essential source of help for family members managing an illness or disability. If the work of family caregivers was replaced by paid home health care staff, national health care costs are estimated to increase by between $45 and $94 billion per year.
The physical and mental health of caregivers is another important arena for public health practice and policy due to the toll of their caregiving responsibilities. Family caregivers are nearly twice as likely as the general population to develop multiple chronic illnesses themselves due to stress and neglect of their own health and well-being. One third of caregivers describe their own health as "fair to poor", compared to one fifth among the general population. Given that the demands of providing care to a loved one may compromise caregiver health and functioning and increase risk of developing chronic conditions, there is a pressing need to encourage family caregivers to engage in activities that will benefit their own health, well-being, and longevity.
For example, Drs. Connell and Janevic designed and evaluated "Health First: Women Take Time to Stay Active." This randomized clinical trial assessed whether a 6-month telephone counseling intervention was effective in increasing physical activity among female spouse caregivers of people with dementia.
Diabetes, as described by the National Diabetes Information Clearinghouse (NDIC) is a disorder of metabolism-the way our bodies use digested food for growth and energy. Most of the food we eat is broken down into glucose, the form of sugar in the blood. Glucose is the main source of fuel for the body.
After digestion, glucose passes into the bloodstream, where it is used by cells for growth and energy. For glucose to get into cells, insulin must be present. Insulin is a hormone produced by the pancreas, a large gland behind the stomach.
When we eat, the pancreas automatically produces the right amount of insulin to move glucose from blood into our cells. In people with diabetes, however, the pancreas either produces little or no insulin, or the cells do not respond appropriately to the insulin that is produced. Glucose builds up in the blood, overflows into the urine, and passes out of the body in the urine. Thus, the body loses its main source of fuel even though the blood contains large amounts of glucose.
Epilepsy is one of the nation's most common disabling neurological conditions. Epilepsy is a condition characterized by a tendency to have seizures. Seizures are periods of abnormal electrical activity in the brain that can cause involuntary change in body movement or function, sensation, awareness, or behavior. The CDC states about 2.7 million people in the U.S. have epilepsy.
Most people with epilepsy can control their seizures through treatment. Antiepileptic drugs are the most common form of treatment, but side effects from the drugs can present challenges to effective management. For those who do not respond to drugs, other treatments such as surgery or a special diet may help. Some people with epilepsy do not respond to treatment but can take steps to help manage their condition and minimize the potential dangers when experiencing a seizure.
Epilepsy can affect all areas of life, with challenges ranging from an increased risk for depression and anxiety to driving restrictions to facing stigmatization and potential employment discrimination. Priorities for a public health agenda on epilepsy focus on early recognition, diagnosis, and treatment; epidemiology and surveillance; self-management; and quality of life.
Food & Fitness Environment
The prevalence of poor diet and physical inactivity has created a national health crisis. Too many people in our communities suffer the effects of obesity and type 2 diabetes, among other related conditions, especially in low-income neighborhoods. Poor nutrition and physical inactivity may soon overtake tobacco as the leading cause of death in the United States.
A variety of social and environmental factors have an impact on health and quality of life. In many neighborhoods, gas stations and bodegas are the only convenient and affordable source of food, and streets are often unsafe for pedestrians or bicyclists. These same communities often lack parks, trails and nearby open space for families to be active. The places where many people live, work and play no longer support healthy behaviors and vibrant, connected communities.
Health is a product of the systems that surround us. And, in this context, obesity, diabetes and other related problems are a symptom of the systems that are broken.
The W.K. Kellogg Food & Fitness Environment Initiative (WKKF) is working nationally to change systems and policies that will create vibrant communities that support access to locally grown, healthy, affordable food, and safe and convenient places for physical activity and play—for everyone. WKKF is also working directly with nine communities across the U.S. Collaborations in each site are working with multiple sectors and communities—from transportation to public health, from agriculture to education, from youth to the faith community. WKKF believes that by working together they can advance integrated, sustainable and practical solutions that will serve as models for positive change for all communities.
In support of the Food and Fitness Environment, the Center for Managing Chronic Disease is working with WKKF and its partners to facilitate the development of national and cross-site evaluations, provide planning and evaluation technical assistance to the nine funded communities, and coordinate a team of technical assistance providers. The Center is working with the funded communities and other Food and Fitness Environment partners to develop a dynamic evaluation that will describe the process and impact of these local and national efforts.
Functional health literacy refers to individual level skills that move beyond readability. Functional health literacy includes skills necessary in the navigation of the complex health care system, includes prose, document and quantitative literacy and the ability to engage in the exchange of oral communication. Functional Health literacy also encompasses the skills and abilities known as health literacy - an individual's capacity to obtain, process and use health information and services to make decisions and take actions.
The relationship between literacy and health is complex; impacting health knowledge, health status, and access to health services. A person's level of functional health literacy directly affects his or her ability to navigate the health care system, share personal and health information with providers, engage in self-care and chronic disease management, adopt health promoting behaviors, and make judgments when faced with decision making regarding health-related information.
Individuals with inadequate functional health litearcy often struggle with basic tasks when managing a chronic condition such as reading and comprehending prescription bottles, appointment slips, self-management instructions, and educational brochures. Inadequate functional health literacy can be a barrier to controlling disease and can subsequently lead to poor health outcomes and increased health care costs.
Some populations are more likely to have lower functional health literacy than others. Most vulnerable are the elderly (age 65+), people living in poverty, those with lower educational attainment, underrepresented populations (African Americans and Hispanics); and immigrant populations with limited to no English proficiency. Many of the same populations at risk for limited literacy also suffer from disparities in health status, including heart disease, diabetes, obesity, HIV/AIDS, cancer and death.
- Ninety million people in the United States have difficulty understanding and using health information.
- According to the American Medical Association, poor health literacy is "a stronger predictor of a person's health than age, income, employment status, education level, and race"
- Inadequate health literacy is estimated to account for $50–73 billion per year in excess costs to the US health care system.
Who is Impacted?
The 2003 National Assessment of Adult Literacy (NAAL) is the first national assessment of health literacy.
Findings of Interest
- The majority of adults (53%) had Intermediate health literacy. An additional 12% of adults had Proficient health literacy. Among the remaining adults, 22% had Basic health literacy, and 14% had Below Basic health literacy.
- Women had higher average health literacy than men; 16% of men had Below Basic health literacy compared with 12% of women.
- At every increasing level of self-reported overall health, adults had higher average health literacy than adults in the next lower level.
Heart disease is a very prevalent chronic condition that affects people worldwide. The CDC states that heart disease is the leading cause of death in the United States and is a major cause of disability. Almost 700,000 people die of heart disease in the U.S. each year. That is about 29% of all U.S. deaths. Heart disease is a term that includes several more specific heart conditions. The most common heart disease in the United States is coronary heart disease, which can lead to heart attack.
- An intervention for older women hospitalized for coronary artery disease that focuses on their perceived priority management concern.
- An exploration of the effect of older patients choosing their preferred form of heart disease management intervention on their health status and health care use.
Undeniably, health and disease are global issues. In these times of great mobility, a health-related problem existing in one part of the globe eventually affects the wider world. Chronic disease is a major worldwide problem. Even in countries where infectious diseases are rampant, the World Health Organization has noted that people are most likely to die from a chronic illness. Heart disease, for example, is far and away the biggest cause of global mortality. In lower income countries such as China one finds that what kills people there is the same as in the U.S.
A solution developed in one country can bring relief to people in other countries. The Center contributes to improving global health in three ways.
- Through collaboration with international colleagues, the Center adapts and assesses in new locations interventions proven in the United States
- The Center imports successful interventions from elsewhere and assesses their effectiveness for Americans
- The Center explores, with international colleagues, important disease prevention and management questions that are in need of answers
Management Across Conditions
People who manage digestive, neurological or rheumatological conditions experience many social, behavioral, economic, and clinical management challenges. These categories of chronic illness can present complex problems for patients and their families and have not always received adequate attention in intervention research. Although considerable information about self management by patients with heart, cancer, respiratory disease, arthritis and diabetes is available, very little exploration of management tasks by patients with these conditions is available.
Obesity & Overweight
The Centers for Disease Control and Prevention notes that since the mid-1970s, the prevalence of overweight and obesity has increased sharply for both adults and children. Data from two NHANES surveys show that among adults aged 20–74 years the prevalence of obesity increased from 15.0% (in the 1976–1980 survey) to 32.9% (in the 2003–2004 survey). The two surveys also show increases in overweight among children and teens. For children aged 2–5 years, the prevalence of overweight increased from 5.0% to 13.9%; for those aged 6–11 years, prevalence increased from 6.5% to 18.8%; and for those aged 12–19 years, prevalence increased from 5.0% to 17.4%.
These increasing rates raise concern because of their implications for Americans’ health. Being overweight or obese increases the risk of many diseases and health conditions, including the following:
- Dyslipidemia (for example, high total cholesterol or high levels of triglycerides)
- Type 2 diabetes
- Coronary heart disease
- Gallbladder disease
- Sleep apnea and respiratory problems
- Some cancers (endometrial, breast, and colon)
Although one of the national health objectives for the year 2010 is to reduce the prevalence of obesity among adults to less than 15%, current data indicate that the situation is worsening rather than improving.
Defining Overweight and Obesity
Overweight and obesity are both labels for ranges of weight that are greater than what is generally considered healthy for a given height. The terms also identify ranges of weight that have been shown to increase the likelihood of certain diseases and other health problems.
Definitions for Adults
For adults, overweight and obesity ranges are determined by using weight and height to calculate a number called the “body mass index” (BMI). BMI is used because, for most people, it correlates with their amount of body fat.
- An adult who has a BMI between 25 and 29.9 is considered overweight.
- An adult who has a BMI of 30 or higher is considered obese.
It is important to remember that although BMI correlates with the amount of body fat, BMI does not directly measure body fat. As a result, some people, such as athletes, may have a BMI that identifies them as overweight even though they do not have excess body fat. For more information about BMI, visit the CDC's Body Mass Index pages.
Other methods of estimating body fat and body fat distribution include measurements of skinfold thickness and waist circumference, calculation of waist-to-hip circumference ratios, and techniques such as ultrasound, computed tomography, and magnetic resonance imaging (MRI).
Definitions for Children and Teens
For children and teens, BMI ranges above a normal weight have different labels (at risk of overweight and overweight). Additionally, BMI ranges for children and teens are defined so that they take into account normal differences in body fat between boys and girls and differences in body fat at various ages. For more information about BMI for children and teens (also called BMI-for-age), visit the CDC's BMI for Children and Teens pages.
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