Introduction

Chronic diseases have emerged in recent decades as the major cluster of health concerns of the American people. A chronic condition or illness, in general terms, is a condition that is slow in progression, long in duration, and void of spontaneous resolution, and it often limits the function, productivity, and quality of life of those who live with them.

Globally, chronic diseases will account for 69 percent of all global deaths by 2030, and 80 percent of these deaths will occur in low-income and middle-income countries. According to the Centers for Disease Control and Prevention (CDC), in the United States, chronic diseases currently account for 70 percent of all deaths (Kung et al., 2008). In fact, close to 48 million Americans report a disability related to a chronic illness (Brault et al., 2009). Arthritis is the most common cause of disability, affecting about 8.6 million people, followed by back or spine problems, which affect about 7.6 million people. In addition, heart problems impede the functioning of about 3 million people (Brault et al., 2009).

Looking toward the future, the first baby boomers reach age 65 in 2011, and, of these, 37 million, or 6 out of 10, will be managing more than one chronic disease by 2030. For certain chronic diseases, the burden will be substantial; it is estimated that 14 million baby boomers will live with diabetes, and almost half will live with arthritis (expected to hit just over 26 million in 2020) (HHS, 2010).

Some chronic illnesses do not contribute significantly to mortality but can severely impact the quality of life of the individuals who live with them. Asthma, for example, affects more than 16 million American adults. Individuals who identify asthma as their main disabling condition report more



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Introduction Chronic diseases have emerged in recent decades as the major cluster of health concerns of the American people. A chronic condition or illness, in general terms, is a condition that is slow in progression, long in dura- tion, and void of spontaneous resolution, and it often limits the function, productivity, and quality of life of those who live with them. Globally, chronic diseases will account for 69 percent of all global deaths by 2030, and 80 percent of these deaths will occur in low-income and middle-income countries. According to the Centers for Disease Control and Prevention (CDC), in the United States, chronic diseases currently ac- count for 70 percent of all deaths (Kung et al., 2008). In fact, close to 48 million Americans report a disability related to a chronic illness (Brault et al., 2009). Arthritis is the most common cause of disability, affecting about 8.6 million people, followed by back or spine problems, which affect about 7.6 million people. In addition, heart problems impede the functioning of about 3 million people (Brault et al., 2009). Looking toward the future, the first baby boomers reach age 65 in 2011, and, of these, 37 million, or 6 out of 10, will be managing more than one chronic disease by 2030. For certain chronic diseases, the burden will be substantial; it is estimated that 14 million baby boomers will live with diabetes, and almost half will live with arthritis (expected to hit just over 26 million in 2020) (HHS, 2010). Some chronic illnesses do not contribute significantly to mortality but can severely impact the quality of life of the individuals who live with them. Asthma, for example, affects more than 16 million American adults. Indi- viduals who identify asthma as their main disabling condition report more 21

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22 LIVING WELL WITH CHRONIC ILLNESS physically unhealthy days, mentally unhealthy days, and days with activity limitations in the previous month than people who do not have asthma. Data from the California Health Interview Survey, for example, indicate that about 30 percent of adults with asthma experienced daily or weekly asthma symptoms. In 2005, asthma accounted for 2 million days of missed work among Californians. Epilepsy, another example, is a chronic neurological condition identified by recurring seizures. Epilepsy can be caused by different conditions that af- fect a person’s brain, such as stroke, head trauma, and infection, and those with the condition are at higher risk for injuries (both unintentional and self-inflicted) and other chronic illnesses. Epilepsy affects about 2 million people in the United States, which makes it one of the most common neuro- logical conditions. Epilepsy accounts for $15.5 billion in medical costs and loss or reduction in earnings and productivity. Despite medical attention and treatment, more than one-third of individuals with epilepsy continue to have seizures, a situation that significantly affects the quality of life for those living with this chronic illness. In addition, many people who suffer from seizure disorders also live with the burden and risk of a phenomenon known as sudden unexpected death from epilepsy (CDC, 2011). Chronic illnesses not only impact the lives of millions of people in America but also are a major contributor to health care costs. The medi- cal care costs of people with chronic illness represent 75 percent of the $2 trillion spent annually in the United States on health care (Kaiser Family Foundation, 2010). The substantial costs in terms of the number of lives lost, quality of life diminished, and medical expenditures mean that public health interventions are needed to reduce the burden of chronic disease, especially among those at highest risk (e.g., those with prediabetes, hyper- tension, high cholesterol) and in preventing further consequences among those with chronic illnesses (secondary prevention). In 2010, the CDC and the Arthritis Foundation sought assistance from the Institute of Medicine (IOM) to identify population-based public health actions that can help reduce disability and improve functioning and qual- ity of life among individuals who are at high risk of developing a chronic illness and those with one or more chronic illnesses. STATEMENT OF TASK The statement of task for this consensus study provides that the IOM will establish a committee to examine the nonfatal burden of chronic dis- ease and the implications for population-based public health action. A set of questions was to be considered for persons with single as well as multiple chronic diseases:

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23 INTRODUCTION 1. What consequences of chronic diseases are most important (cri- teria to be decided and justified by the committee) to the nation’s health and economic well-being? 2. Which chronic diseases should be the focus of public health efforts to reduce disability and improve functioning and quality of life? 3 Which populations need to be the focus of interventions to reduce the consequences of chronic disease including the burden of dis- ability, loss of productivity and functioning, health care costs, and reduced quality of life? 4. Which population-based interventions can help achieve outcomes that maintain or improve quality of life, functioning, and disability? • hat is the evidence on effectiveness of interventions on these W outcomes? • o what extent do the interventions that address these outcomes T also affect clinical outcomes? • o what extent can policy, environmental, and systems change T achieve these outcomes? 5. How can public health surveillance be used to inform into public policy decisions to minimize adverse life impacts? 6. What policy priorities could advance efforts to improve life impacts of chronic disease? 7. What is the role of primary prevention (for those at highest risk), secondary, and tertiary prevention of chronic disease in reducing or minimizing life impacts (e.g., preventing diabetes in pre-diabetics, preventing incidence of disability in people with arthritis, prevent- ing recurrence of cancer, managing complications of cardiovascular disease)? In conducting this work, the committee was asked to consider the following diseases: heart disease and stroke, diabetes, arthritis, depres- sion, respiratory problems (asthma, chronic obstructive pulmonary disease [COPD]), chronic neurological conditions, and cancer. These diseases or categories of disease were included in the statement of task as examples of diseases for the committee to consider, not as a prescriptive set of diseases to include in the report. In fact, the committee was advised by the spon- sors of this report not to focus on the common high-mortality diseases, but rather to consider diseases that have the potential to cause or actually do cause functional limitations and/or disabilities. This guidance thus allowed the committee to consider a wide range of chronic diseases, including all chronic diseases, in the context of living well. With respect to primary pre- vention, the committee was asked to consider prevention only among indi- viduals with high-risk factors (e.g., prediabetes). Chronic illnesses related

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24 LIVING WELL WITH CHRONIC ILLNESS Additional Guidance from the Sponsors Acknowledging the depth and breadth of the statement of task and the time and resources needed, the sponsors advised the committee to focus the delibera- tions and recommendations in the report to: • dentify the consequences of chronic diseases that are most important to I the nation’s health and economic well-being. • dentify which chronic diseases and populations should be the focus of I public health efforts to reduce disability and improve quality of life. • dentify which population-based interventions can help achieve outcomes I that maintain or improve quality of life, functioning, and disability. • dentify ways to highlight the morbidity of arthritis and influence systematic I change to improve the lives of those living with arthritis. • ecommend population-based public health actions and strategies for R implementation. to congenital disorders, infectious diseases, substance abuse, and childhood conditions are not the focus of this study. COMMITTEE APPROACH Over a 12-month period, a 17-member committee held 5 in-person meetings, convened a series of small-group, chapter-focused conference calls, and conducted extensive literature reviews and Internet searches regarding an array of topic areas related to chronic illness. These topics ranged from disease-specific articles to social determinants of health dis- cussions; from surveillance methods to various chronic care models; from health care economics to public health policies; from suffering to health- related quality of life; from patient-centered approaches to writings on care- giver burden; from health care system efforts to public health approaches; from evidenced-based interventions to promising community-based models; and from CDC studies to a series of IOM reports related to the topic—and much more. Some committee members attended meetings related to public health and chronic disease prevention, and others participated in relevant meetings on chronic disease as part of the information-gathering process. The com- mittee conducted two public workshops in which we listened to a variety of perspectives on living well with chronic illness to use in our deliberations and development of this report. In addition, the committee commissioned two experts to develop papers on specific topics to supplement the report.

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25 INTRODUCTION The paper topics include depression and chronic illness and community care models for chronic disease. These papers are found in Appendixes A and B. ORGANIZATION OF THE REPORT The introductory chapter provides the background and premise for this report, the charge to the committee, the scope of the study, and the method for this report. Chapter 1, “Living Well with Chronic Illness,” describes the conceptual frameworks and population-based approach used for development of this report. It also provides a contextual construct for discussion and informa- tion in the chapters to follow. Chapter 2, “Chronic Illnesses and the People Who Live with Them,” explores the differences, similarities, and clinical stages among many chronic illnesses; discusses the burden of chronic illness on both those who live with them and their communities; highlights nine exemplar conditions that are clinically important, impact function and disability, impact the community, families, and caregivers, and represent an important challenge to public health; and discusses the economic consequences of chronic illness on the nation’s health. Chapter 3, “Policy,” describes the challenges and opportunities for de- veloping and testing promising policies and approaches, and using current legislation that supports community-level programs and actions to help people who are living with chronic illness live better. Chapter 4, “Community-Based Intervention,” provides an overview of the state of the art of community-based interventions aimed at helping people live well with chronic illness. Chapter 5, “Surveillance and Assessment,” describes the conceptual framework for chronic disease surveillance and explains how appropriate surveillance methods can enhance living well with chronic illness by provid- ing information and data for public health policies and interventions. This chapter also examines and identifies gaps in the current data sources and methods for surveillance of certain chronic illnesses and discusses future data sources, methods, and research directions for surveillance to enhance living well with chronic illness. Chapter 6, “Interface of the Public Health System, the Health Care System, and the Non–Health Care Sector,” examines how the public health and health care systems and non–health care organizations could align to improve outcomes in prevention and management of chronic diseases. Chapter 7, “The Call for Action,” describes the committee’s findings and conclusions. Appendix A is a paper by Wayne J. Katon called “Improving Recogni-

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26 LIVING WELL WITH CHRONIC ILLNESS tion and Quality of Depression Care in Patients with Common Chronic Medical Illnesses.” Appendix B is a paper by Chad Boult and Erin K. Murphy called “New Models of Comprehensive Health Care for People with Chronic Conditions.” Appendix C contains the agendas for the public workshops held by the committee, and Appendix D contains biographical sketches of committee members. REFERENCES Brault, M.W., J. Hootman, C.G. Helmick, K.A. Theis, and B.S. Armour. 2009. Prevalence and most common causes of disability among adults—United States, 2005. Morbid- ity and Mortality Weekly Report 58(16):421–426. http://www.cdc.gov/mmwr/preview/ mmwrhtml/mm5816a2.htm (accessed October 4, 2011). CDC (Centers for Disease Control and Prevention). 2011. Targeting Epilepsy. Improving the Lives of People with One of the Nation’s Most Common Neurological Conditions. At a Glance. http://www.cdc.gov/chronicdisease/resources/publications/aag/pdf/2011/ Epilepsy_AAG_2011_508.p df (accessed October 12, 2011). HHS (U.S. Department of Health and Human Services). 2010. News Release. Secretary Sebelius Awards Funding for Chronic Disease Self-Management Programs for Older Americans. http://www.hhs.gov/news/press/2010pres/03/20100330a.html (accessed No- vember 16, 2011). Kaiser Family Foundation. 2010. U.S Health Care Costs. http://www.kaiseredu.org/Issue- Modules/US-Health-Care-Costs/Background-Brief.aspx (accessed October 12, 2011). Kung, H.C., D.L. Hoyert, J. Xu, and S.L. Murphy. 2008. Deaths: Final data for 2005. National Vital Statistics Reports 56(10). http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_10.pdf (accessed October 4, 2011).