2

Chronic Illnesses and
the People Who Live with Them

INTRODUCTION

Some chronic diseases are well known as “causes” of mortality. Cardiovascular disease, many cancers, stroke, and chronic lung disease are the most common causes of death in the United States (Mokdad et al., 2004; Thacker et al., 2006). There are many other chronic illnesses, however, that may or may not directly cause death but may have multiple effects on quality of life. The quality of life impact of these chronic illnesses is not as widely appreciated in public health, clinical practice, or health policy planning. Chronic illnesses often cause bothersome health problems for those affected and/or those around them, problems that persist over time. These include problems with physical health (e.g., distressing symptoms, physical functional impairment), mental health (e.g., emotional distress, depression, anxiety), or social health (e.g., social functional impairment), all of which are associated with lower quality of life (Cella et al., 2010). In many people with chronic illnesses, a mild impairment in any single one of these aspects of health leads to impairments in other aspects and may progress further to disability.

There is, in fact, a spectrum of chronic diseases that are in some ways quite disparate, yet they share certain commonalities that merit their being listed together. They are disparate in that they affect different organ systems and are frequently characterized by different time courses and the severity of disease burden. They are similar in that their effects on health and individual functioning share common pathways and outcomes. This chapter explores the differences and similarities among many chronic diseases,



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2 Chronic Illnesses and the People Who Live with Them INTRODUCTION Some chronic diseases are well known as “causes” of mortality. Car- diovascular disease, many cancers, stroke, and chronic lung disease are the most common causes of death in the United States (Mokdad et al., 2004; Thacker et al., 2006). There are many other chronic illnesses, however, that may or may not directly cause death but may have multiple effects on quality of life. The quality of life impact of these chronic illnesses is not as widely appreciated in public health, clinical practice, or health policy plan- ning. Chronic illnesses often cause bothersome health problems for those affected and/or those around them, problems that persist over time. These include problems with physical health (e.g., distressing symptoms, physical functional impairment), mental health (e.g., emotional distress, depression, anxiety), or social health (e.g., social functional impairment), all of which are associated with lower quality of life (Cella et al., 2010). In many people with chronic illnesses, a mild impairment in any single one of these aspects of health leads to impairments in other aspects and may progress further to disability. There is, in fact, a spectrum of chronic diseases that are in some ways quite disparate, yet they share certain commonalities that merit their being listed together. They are disparate in that they affect different organ systems and are frequently characterized by different time courses and the severity of disease burden. They are similar in that their effects on health and in- dividual functioning share common pathways and outcomes. This chapter explores the differences and similarities among many chronic diseases, 51

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52 LIVING WELL WITH CHRONIC ILLNESS considers several exemplar diseases, health conditions, and impairments in more detail, and examines the people living with these illnesses and the ways in which they are affected.1 THE SPECTRUM OF CHRONIC ILLNESSES: DIFFERENCES IN TIME COURSE/CHRONICITY, HEALTH BURDEN, AND CONSEQUENCES In this section, we first consider the nature of chronic diseases, includ- ing their similarities and differences. We then discuss the effects of these illnesses on the ability to live well with them. The National Center for Health Statistics has defined chronic diseases as those that persist for 3 months or longer or belong to a group of condi- tions that are considered chronic (e.g., diabetes), regardless of when they began. Although some (e.g., polymyalgia rheumatica, depression) may re- solve, most are lifelong diseases. Chronic diseases can vary in multiple ways, including their stage at presentation and characteristic clinical symp- toms and their natural history (time course). Some specific conditions have typical time courses for clinical progression. Other chronic diseases, such as treated breast or prostate cancers, may follow a quiescent pattern for many years. Similarly, the health burden in terms of symptoms and func- tional impairment, requirements for self-management, effects on significant others, and individual economic impact vary. This results in disparate pat- terns of human suffering across the spectrum of chronic illnesses. Table 2-1 displays selected patterns of chronic illnesses along important dimensions. For example, some illnesses (e.g., diabetes) have high self-management requirements, whereas others (e.g., Alzheimer’s disease) may require sub- stantial care from others. Age of onset may also influence complications and burden; for example, older onset rheumatoid arthritis is associated with more shoulder involvement and symptoms of polymyalgia rheumatica and less frequent hand deformities compared with younger onset disease (Turkcapar et al., 2006). The stability of the condition over time is also an important determinant of overall health burden. Below we summarize the spectrum of chronic diseases as early, moder- ate, and late stage. As highlighted in Table 2-1, individuals with certain chronic illnesses, such as congestive heart failure, chronic obstructive pul- monary disease (COPD), Parkinson’s disease, and diabetes mellitus, may 1 Some chronic illnesses have a recognized precursor state (e.g., osteopenia, hyperlipidemia, ductal carcinoma in situ) that may or may not progress to a chronic condition that people sense and suffer from. Although these presymptomatic states, if diagnosed, may cause symp- toms (e.g., worry) or socioeconomic consequences (e.g., inability to obtain insurance), this report focuses on persons who actually have and are living with a chronic illness, not just a precursor state. Thus, such states as asymptomatic hypothyroidism or stage 3 chronic kidney disease are not considered.

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53 CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE WITH THEM present at various stages during the course of their illness with different health and economic consequences. Chronic illnesses can be characterized by the stage (i.e., clinical sever- ity), pattern (i.e., continuous versus intermittent symptoms), and antici- pated course (i.e., stable, fixed deficit versus progressive). Because the stage of the condition has the largest impact on health and social consequences, we have organized this section around condition stages. Early-Stage Chronic Illnesses We define early-stage chronic illnesses as ones that cause little or no functional impairment and impose a low burden on others. This often characterizes certain chronic illnesses early after their diagnosis or in their uncomplicated stages. For example, such illnesses as benign prostatic hy- pertrophy (BPH) or early Parkinson’s disease have mild symptoms and burden. Some chronic early-stage illnesses, such as uncomplicated diabetes or New York Heart Association stage I (i.e., individuals with heart disease with no physical limitations) or II heart failure (i.e., individuals with heart disease with slight physical activity limitations), although associated with low functional impairment and burden to others, are associated with a high self-management burden (e.g., the need to monitor sodium and fluid intake and daily weight in heart failure, the need for self-monitoring of blood glu- cose in diabetes). Other early-stage chronic illnesses, such as mild asthma or osteoarthritis, may cause physical symptoms and functional limitation only intermittently, with asymptomatic periods in between, requiring a low to moderate degree of self-management. Moderate-Stage Chronic Illnesses Moderate-stage illnesses can be characterized by moderate, as opposed to low, degree of functional impairment and disability and moderate to high self-management and caregiver burden. At this stage, symptoms often interfere with usual lifestyles. Examples include painful hip or knee osteo- arthritis and stage 2 or 3 Parkinson’s disease. Several illnesses are associated with disabling episodic flares, although they may have low burden between flares. They are distinguished from early- stage illnesses following this pattern in that they cause moderate to severe, episodic disability (e.g., hospitalization for a flare of COPD), increased self-management and caregiver burden, and moderate to high economic impact. COPD, rheumatoid arthritis, depression, and migraine headache are conditions that often follow this pattern. Some people with complicated diabetes may have functional impairment due to peripheral neuropathy or a lower extremity amputation yet remain stable for some years, despite high

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TABLE 2-1 Selected Patterns of Chronic Illnesses: Stage, Chronicity, Burden, and Example Illnesses 54 Health Burden and Consequences (not including economic) Functional Chronicity/ impairment/ Self-management Stage Time Course Symptomsa disability burden Burden to others Example Illnesses Early Chronic with Minimal or none Low Variable Low Asthma in adults, mild episodic flares between flares degenerative joint disease Chronic Mild Low Low Low BPH, mild Parkinson’s disease Chronic Mild Low High Low Uncomplicated but symptomatic diabetes, NYHA I or II heart failure Moderate Chronic with Mild or minimal Moderate Moderate Moderate COPD, RA, depression, episodic flares between flares, migraine headache moderate or severe during flares Chronic, None to Low Low Low Breast or prostate cancer in quiescent moderate remission Chronic, stable Moderate Moderate High Moderate Complicated diabetes, mild to moderate stroke, mild to moderate posttraumatic states, RA with some joint deformities

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Chronic, Moderate Moderate Moderate High Severe osteoarthritis, progressive severe Parkinson’s disease, progressive Alzheimer’s disease, progressive macular degeneration, progressive hearing impairment Late Chronic, Moderate or High Variable High Severe dementia, severe progressive severe diabetes with extensive vascular disease Chronic, slowly Moderate or High High High NYHA Class III or IV heart progressive severe failure, COPD with chronic respiratory failure, end-stage renal disease on dialysis Terminal Severe High High High Metastatic cancer, patients in hospice NOTE: BPH = benign prostatic hyperplasia; COPD = chronic obstructive pulmonary disease; NYHA = New York Heart Association; RA = rheu- matoid arthritis. aSpecific symptoms vary by condition. 55

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56 LIVING WELL WITH CHRONIC ILLNESS self-management burden, moderate caregiver burden, and moderate to high economic impact on the individual. Similarly, people with a posttraumatic disabling condition or previous mild to moderate stroke may have a chronic pattern that remains stable over some time despite having moderate func- tional impairment and disability and moderate to high self-management and caregiver burden and individual economic impact. Another pattern shown by moderate-stage chronic illnesses is more pro- gressive. Alzheimer’s disease typically begins with memory loss and is later associated with functional impairment and behavioral and psychological complications, leading to moderate to high self-management and caregiver burden and individual economic impact. People with Parkinson’s disease and some with macular degeneration or hearing impairment may also ex- perience this time course and burden. Amyotrophic lateral sclerosis (ALS) often begins with milder symptoms and burden but may progress rapidly to severe disability and death. Late-Stage Chronic Illnesses We define late-stage chronic illnesses as those that are slowly or rapidly progressive or terminal and are characterized by high functional impair- ment and disability and self or caregiver management burden. People with late-stage chronic illnesses often have multiple chronic conditions (MCCs) and may suffer a rapidly progressive decline in multiple functions. For example, people with severe dementia or people with diabetes and severe vascular disease often have a progressive course with high burden on sig- nificant others. In its terminal stage, metastatic cancer is often accompanied by a rapidly progressive, downhill course. In contrast, some people with late-stage chronic illnesses progress more slowly. For example, some people with end-stage renal disease who are on dialysis or some people with severe COPD and require chronic oxygen may remain stable for years. Other chronic conditions (e.g., those with spinal cord injuries) may result in high functional impairment and remain stable for many years. Variation in a Chronic Illness in Time Course, Health Burden, and Consequences Although Table 2-1 indicates differences in commonly encountered patterns among chronic illnesses, it also highlights the marked variation within them. A single chronic illness may, in different people, demonstrate its own range of time course and burden. Some people with the same con- dition may progress from mild burden to severe limitation to disability or death at a constant, rapid rate, and others may progress slowly or not at all. For example, although the median survival for a person younger than

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57 CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE WITH THEM age 75 with Alzheimer’s disease is 7.5 years, a quarter do not survive 4.2 years and another quarter live beyond 10.9 years (Larson et al., 2004). Similarly, some people with diabetes progress inexorably to severe visual impairment, and others show little evidence of severe ocular complications or retinopathy regression even years after diagnosis (Klein et al., 1989). Only a few illnesses have a “typical” type of progression in that the vast majority of affected people show the same rate of worsening status. Most chronic illnesses are more variable, with different individuals with the same illness progressing at widely varying rates. The variation in progression rates is often independent of medical treatment. As a result of the variabil- ity of the natural history of individual illnesses, comorbidity, interactions between illness and environment, and adverse effects of treatments, the true burden of chronic illness in an individual is inconsistent and sometimes unpredictable. Thus, typical illness patterns of consequences are only rough guides. Any individual person may have a health burden that varies from the typical situation. THE SPECTRUM OF CHRONIC ILLNESSES: COMMON CONSEQUENCES In addition to demonstrating differences among chronic illnesses, Table 2-1 also displays their common consequences. It is useful to consider that all of these illnesses create a common human burden of suffering. Al- though these illnesses have multiple mechanisms leading to suffering with variable time courses and severity, they all affect the same aspects of health: physical, mental, and social (Cella et al., 2010). A variety of models have been used to describe the process leading from disease to consequences in these aspects, including the Disablement Model that includes pathology; impairment at the tissue, organ, or body level, functional limitations; and disability (Nagi, 1976). More recently, the World Health Organization’s (WHO’s) International Classification of Functioning, Disability and Health (known as ICF) has classified health and health-related domains from “body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and partici- pation. Since an individual’s functioning and disability occurs in a context, the ICF also includes a list of environmental factors” (WHO, [a]). Regard- less of the model used to explain the pathway from disease to consequences, chronic illnesses all lead, in their own ways, to human suffering (Cassell, 1983). In Table 2-1, we have rated the health burden and consequences of chronic illnesses along four dimensions: functional impairment/disability, self-management burden, and burden to others. The economic impact of chronic illness to the individual is described separately later in the chapter. Below we discuss important dimensions of the health burden of chronic

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58 LIVING WELL WITH CHRONIC ILLNESS illnesses and mention a measurement approach developed by the Patient Reported Outcomes Measurement Information System (PROMIS). The PROMIS instruments also measure related constructs of social support, interpersonal attributes, and global health but do not include management burden directly or caregiver burden (Cella et al., 2010). In a pilot study of a large but unrepresentative sample of the general population, PROMIS selected five domains to assess health-related quality of life in people with chronic illnesses: physical function, fatigue, pain, emotional distress, and social function (Rothrock et al., 2010). They found that people with chronic illnesses reported poorer scores on these domains than did people without such illnesses and that people with two or more chronic illnesses had poorer scores than people with only one had. Symptoms These are medical or psychiatric symptoms that can be measured quan- titatively and/or qualitatively. Examples include pain, fatigue, immobility, dyspnea on exertion, claudication (lameness), foot dysesthesia (numbness), depressive symptoms, seizures, and behavioral and psychological symp- toms of dementia. The PROMIS approach measures physical symptoms, emotional distress, cognitive function, and positive psychological function (Cella et al., 2010). Functional Impairment/Disability Functional impairment can relate to restrictions in physical, mental, or social function. Disability is a more severe impairment that limits the performance of functional tasks and fulfillment of socially defined roles (handicap). For example, physical disability is the inability to complete specific physical functional tasks, called activities of daily living (ADLs) and instrumental activities of daily living (IADLs), that are important to daily life. The PROMIS measures assess both physical function and social function. Chronic illnesses can cause functional impairment or disability through any of the three following health pathways: 1. Directly causing impairment or disability 2. Causing other medical complications that lead to impairment and disability 3. Causing mental health complications that lead to impairment and disability Below we consider examples of each.

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59 CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE WITH THEM ↓Functional Chronic condition: Impaired Disability Arthritis mobility status/frailty FIGURE 2-1 Osteoarthritis. 2-1.eps Chronic Illnesses Directly Causing Disability Osteoarthritis causes impairment or disability directly through reduced mortality or pain in such joints as the knee or hip. Knee osteoarthritis results in 25 percent of affected individuals having difficulty performing activities of daily living due to pain and limited mobility (CDC, [c]). Knee and hip osteoarthritis are the third leading cause of years lived with dis- ability in the United States (Figure 2-1) (Michaud et al., 2006). Chronic Illnesses Leading to Other Medical Conditions Diabetes can lead to impairment and disability indirectly, such as its effects on blood vessels. For example, visual impairment and end-stage renal disease are often microvascular complications, and coronary heart and cerebrovascular disease are frequently macrovascular complications (Figure 2-2). Data from the National Health and Nutrition Examination Survey show that cardiovascular disease (i.e., coronary heart disease or chronic Diabetes mellitus Development of vascular complications: • Retinopathy ESRD, Blindness, Impaired mobility • Neuropathy Amputation, Stroke • Peripheral arterial CHF disease ↓ Functional • CHD status/frailty • Cerebrovascular disease Disability FIGURE 2-2 Diabetes mellitus and -2.eps heart disease as examples of complica- 2 coronary tions leading to disability. NOTE: CHD = chronic heart disease; CHF = chronic heart failure; ESRD = end stage renal disease.

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60 LIVING WELL WITH CHRONIC ILLNESS heart disease [CHD], heart failure, and stroke) and obesity among older adults with diabetes were associated with greater disability in several areas, including lower extremity mobility, general physical activity, activities of daily living, and instrumental activities of daily living (Kalyani et al., 2010). Data from the Women’s Health and Aging Study show that women with diabetes had a higher prevalence of mobility disability and severe walking limitation and that this was partially explained by peripheral arterial dis- ease and peripheral nerve dysfunction (Volpato et al., 2002). Chronic Illnesses Leading to Mental Health Conditions Chronic medical illnesses, such as diabetes, may also lead to mental health illnesses, such as depression and dementia, which have an adverse effect on health behaviors, leading to increased risk of clinical complica- tions (Figure 2-3). Both diabetes and cardiovascular disease are associated with an in- creased risk of developing depression (Mezuk et al., 2008; Rugulies, 2002). Conversely, depressive disorders in persons with diabetes are also associ- ated with poor adherence to therapy (Gonzalez et al., 2008), worse control of glycemia and cardiovascular risk factors (Lustman et al., 2000), and greater diabetes complications (De Groot et al., 2001). Thus, individuals who develop depression are at higher risk of disability secondary to their greater propensity to develop vascular complications. Similarly, population- based studies indicate that type 2 diabetes is a risk factor for age-related cognitive decline (Biessels et al., 2008) with a 1.5- to 2.0-fold increased Chronic condition: Development of Diabetes mellitus or mental health complications Coronary heart disease Impaired mobility Dementia Depression (vascular, AD) ↓Functional status/frailty Poor health behaviors Poor medical adherence Disability Development of vascular complications FIGURE 2-3 Association of chronic illnesses with mental health consequences. NOTE: AD = Alzheimer’s disease. 2-3.eps

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61 CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE WITH THEM risk of all-cause dementia (Cukierman et al., 2005). Studies also show that cognitive impairment is associated with poor diabetes self-management behaviors (Sinclair et al., 2000; Thabit et al., 2009) hyperglycemia (Munshi et al., 2006), and higher prevalence of diabetes complications (Roberts et al., 2008), which are predicted to contribute to functional, in addition to cognitive, impairment in this population. In 2011, the Centers for Disease Control and Prevention’s (CDC’s) National Center for Chronic Disease Prevention and Health Promotion re- leased a public health action plan on mental health promotion and chronic disease prevention, which contains eight strategies to integrate mental health and public health programs that address chronic disease (CDC, 2011c). The eight strategy categories include surveillance, epidemiology research, prevention research, communication, education of health profes- sionals, program integration, policy integration, and systems to promote integration. In recognizing the complexity of living well and effectively managing a chronic illness when a serious mental health condition is pres- ent, the committee has included a separate article highlighting depression care in patients with medical chronic illness (see Appendix A). Chronic Illness Management Burden In many cases, patients themselves must deliver their own care to ef- fectively manage the chronic illnesses they live with, demanding consistent participation from patients and caregivers (Bayliss et al., 2003). In doing so, patients put forth substantial time, effort, and inconvenience that ac- company day-to-day management of the illness. To properly manage their condition, patients typically run through the process of joining in physically and psychologically beneficial activities, working with health professionals to ensure adherence to treatment guidelines, monitoring health and making appropriate care decisions, and managing the effects of the illness on their physical, psychological, and social well-being (Bayliss et al., 2003). Any disruption to this process can have negative consequences on an individual’s health and livelihood (Bayliss et al., 2003). To effectively address the multiple determinants behind almost all chronic illnesses, self-management regimens dictate appropriate medical guidelines as well as psychological and social functioning (Newman et al., 2004). Chronic illnesses factor into patient lifestyle choices, such as diet, level of physical activity, and suitable living environments, forcing self- management regimens for those illnesses to cross over multiple domains and affect the quality of a patient’s life (Newman et al., 2004). Patients with diabetes, for example, maintain day-to-day self-management routines typi- cally including multiple components (e.g., self-monitoring of blood glucose, carbohydrate counting/awareness, home dialysis, home oxygen use, and

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