Living Well with Chronic Illness A Call for Public Health Action (2012) / Chapter Skim
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2 Chronic Illnesses and the People Who Live with Them
2 Chronic Illnesses and the People Who Live with Them
Pages 51-118
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From page 51... ...
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.
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Below we summarize the spectrum of chronic diseases as early, moderate, and late stage. As highlighted in Table 2-1, individuals with certain chronic illnesses, such as congestive heart failure, chronic obstructive pulmonary disease (COPD)
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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.
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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 = rheumatoid arthritis. aSpecific symptoms vary by condition.
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From page 56... ...
Another pattern shown by moderate-stage chronic illnesses is more progressive. 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.
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. 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.
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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.
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. Chronic Illnesses Leading to Other Medical Conditions Diabetes can lead to impairment and disability indirectly, such as its effects on blood vessels.
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. 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 complications (Figure 2-3)
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. 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)
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Social Isolation and Chronic Illness The social consequence of chronic illness is a significant burden and impacts the ability to live well, especially when a chronic illness presents a visible functional impairment or limitation. In Social Isolation: The Most Distressing Consequence of Chronic Illness (Royer, 1998)
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From page 63... ...
Thus, social isolation can happen in two ways: either the ill person, given the symptoms, unexpected crises, lengthy hospitalizations and convalescence, additional financial burdens, difficult regimens and loss of energy, withdraws from most social contact, or the ill person is avoided or even abandoned by friends and relatives. The committee thinks that social isolation is not only an important consequence of long-term debilitating chronic illnesses; it is also a burden that cuts across a host of chronic illnesses, thus highlighting the commonality among many of them and presenting an opportunity to develop, disseminate, and evaluate relevant community-based interventions to help people with chronic illness.
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From page 64... ...
Caregivers have a lower labor force participation rate than do adults not involved in caregiving. Effects seem particularly pronounced among women, caregivers who are in poor health themselves, older caregivers, those with more caregiving involvement, immediate family members, caregivers with young children at home, those who cared for people with more limitations, caregivers with lower incomes, and those with less education (Lilly et al., 2007)
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From page 65... ...
. Overwhelming evidence connects lower socioeconomic status with poorer health, putting a large portion of the worldwide population at risk for developing one or more chronic illnesses and further financial hardship (Jeon et al., 2009)
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From page 66... ...
Without substantial caregiver, family, or employer support, individuals with one or more chronic illnesses may sink into financial hardship beyond repair. Effects of Comorbidity The burden of chronic illness is often compounded by multiple chronic conditions, a situation that is often referred to as multimorbidity or comorbidity.
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From page 67... ...
Thus, they are also important objects of surveillance in order to define the population burden of chronic disease. This understanding that functional limitation due to one chronic condition may lead to disability through the development of other chronic illnesses provides an opportunity for the prevention of disability.
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EXEMPLAR CHRONIC ILLNESSES One of the charges to the committee was to suggest a new set of diseases for which to provide increased emphasis in terms of surveillance and chronic disease control efforts. As always, such programmatic emphases may change over time, in part because of the advent of new community or clinical interventions that can improve the lives of individuals with chronic
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From page 69... ...
In addressing the challenges of living well with chronic illness, priorities must be established. Although priority setting in public health and health care is not a new concept, it is a matter of growing importance (Ham, 1997)
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multimorbidity associated with several coexisting chronic illnesses; h. management burden, both to the patient, the family, and other caregivers and to the health care system; i.
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3. The highlighting of important psychological and social conse quences that come with many chronic illnesses, including individu
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In addition, the committee endorses CDC's emphasis on "winnable battles" and thinks that the exemplar approach will help identify new types of battles and population-based interventions in the management and control of chronic diseases. Accordingly, the committee has selected nine emblematic diseases, health conditions, and impairments, because together they encompass and flesh out the range of key issues that affect the quality of life of patients with the full spectrum of chronic illnesses.
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. In addition to being one of the most prevalent chronic illnesses, arthritis is the leading cause of disability (McNeil and Binette, 2001)
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Cancer Survivorship The number of cancer survivors in the United States is on the rise; in 2007 there were nearly 12 million people alive in the United States with a previous cancer diagnosis, up from approximately 3.5 million in 1971 (NCI, 2011; Rowland et al., 2004)
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(2007) found a 26 percent increased risk of congestive heart failure in breast cancer survivors between the ages of 66 and 70 who received anthracycline-based chemotherapy, compared with those who did not receive adjuvant chemotherapy.
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. These functional limitations persist long after diagnosis; one study found that the odds of having a functional limitation in cancer survivors versus controls was similar for survivors within 5 years of diagnosis and more than 5 years after diagnosis; in an analysis of data from the National Health and Nutrition Examination Survey, Ness et al.
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Because age is one of the strongest risk factors for cancer, most cancer survivors are older (60 percent are age 65 or older; NCI, 2011) , and 42.1 percent have one or more chronic illnesses other than their cancer (compared with 19.7 percent among those who have not had cancer (Hewitt et al., 2003)
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found solid evidence that the presence and severity of chronic neuropathic pain is associated with impairments in physical, emotional, role, and social functioning. The burden associated with chronic pain reaches far beyond the individual suffering from it (Phillips and Harper, 2011)
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• mportance of prevention. Chronic pain has such severe impacts on I all aspects of the lives of its sufferers that every effort should be made to achieve both primary prevention (e.g., in surgery for broken hip)
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. Dementia is a particularly devastating illness because the clinical manifestations affect the ability to maintain function and manage other chronic illnesses.
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, "research is needed for the development and promulgation of technological advancements that could enhance an individual's capacity to provide care for older adults including the use of ADL technologies and information technologies that increase the efficiency and safety of care and caregiving." Depression Major depression is a common chronic illness that causes a substantial degree of impairment and disability (Michaud et al., 2006)
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From page 82... ...
It frequently accompanies such illnesses as diabetes, disabling osteoarthritis, and cognitive impairment. One study found that 71 percent of Medicare recipients with depression have four or more other chronic illnesses (Wolff and Boult, 2005)
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The committee commissioned a paper by Wayne J Katon on improving recognition and depression care in individuals with common chronic illnesses (see Appendix A)
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. Interventions to reduce hypertension have been shown to reduce the risk of both cardiovascular disease and retinopathy for people with type 2 diabetes; aggressive lowering of LDL cholesterol with HMG-CoA reductase inhibitors reduces the risk of cardiovascular disease, the leading cause of death among those with diabetes (American Diabetes Association, 2011)
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The United Kingdom Prospective Diabetes Study assessed a measure of health status rather than quality of life, so it remains unclear if quality of life was different between the intensive and conventional therapy treatment groups at the end of the study (Bradley et al., 2011)
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There is an important need to create a public health taxonomy of PTDCs that encompasses commonalities and assesses long-term health outcomes, allowing for more precise population surveys and more effective population surveillance of the burdens of trauma. Also, as with other chronic illnesses, monitoring for secondary disease and dysfunctions associated with PTDCs and for a communityoriented research program that attempts to minimize long-term adverse outcomes and promote improved prevention could be valuable.
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. The largest number of deaths is due to cardiovascular disease (Lawrence et al., 2010)
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A shift toward a community-based approach to mental illness management and the increased role of family in the daily care of mentally ill persons has also had a psychosocial, physical, and financial impact on families. Caregiver burden associated with mental illness refers to the "negative responses that occur when caregivers assume unpaid and unanticipated responsibility for the person for whom they are caring who has a disabling mental health problem" (Schulze and Rössler, 2005)
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. Combined objectively measured hearing and visual impairment has the highest risk (relative risk 8.03)
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Differences between older and younger persons must be recognized and considered in a population-based approach to living well with chronic illness. First, with aging, chronic diseases become more prevalent: 43 percent of Medicare beneficiaries have three or more illnesses (IOM, 2009)
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. Demographic Disparities Health Disparities and Living Well with Chronic Illness As noted in Chapter 1, the health of Americans is better now than at any other time in history.
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, class status, lack of health insurance, and the quality of care different racial and ethnic groups receive are also powerful factors that impact the ability for people to make healthy decisions and live full and engaged lives, living well despite their chronic illness. Specifically, SES is highly related to the presence and persistence of health disparities.
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. And the differences in health care quality do not disappear when controlled for SES differences or health insurance, which means that disparities across the range of chronic illnesses and health care services cannot be attributed to economic status or access to care alone.
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. Individuals with poor health literacy are more likely to report having a chronic illness.
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. Although those with poor health literacy are more likely to report having a chronic illness, the reverse is also true.
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for primary prevention and screening and screening in the disease-specific literature, but, after thorough literature review, the committee thinks that there are major gaps in research-based recommendations for routine preventive activities for those with common and important chronic diseases. Although there may be an abiding logic in many instances to extend preventive recommendations intended for healthy persons to those with chronic illnesses (e.g., smoking cessation, hypertension control)
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From page 97... ...
The list in Box 2-3 is not exhaustive, but the committee thinks these preventive efforts need some further consideration for dissemination activities that target persons with chronic illness. RECOMMENDATIONS 1–5 Recommendations 1–4 are the result of the committee's efforts to answer statement of task question 2 -- which chronic diseases should be the focus of public health efforts to reduce disability and improve functioning and quality of life?
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From page 98... ...
Recommendation 2 Although research has attempted to characterize MCCs, the complexity of single chronic illnesses over time has not allowed for MCC taxono mies that will be easily applicable to public health control of chronic diseases. Thus, the committee recommends that CDC: 1.
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Recommendation 5 The committee recommends that the federal health and related agencies that create and promulgate guidelines for general and community and clinical preventive services evaluate the effectiveness of these services for persons with chronic illness, and specifically catalog and dissemi nate these guidelines to the public health and health care organizations that implement them.
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In economic terms, one manifestation of this is that chronic illness degrades society's productive capacity by reducing people's labor output, with people withdrawing from the labor market entirely due to poor health, shifting from full-time to part-time work and/or missing work periodically, accumulating less "human capital" (i.e., knowledge and skills) , and being less effective at work ("presenteeism")
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Still, the direct costs associated with chronic illness have many adverse societal consequences, including that they undermine public and private health insurance programs. It is important to recognize that there is a kind of reciprocal relationship between direct and indirect costs.
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From page 102... ...
) and for certain chronic diseases or disease categories, as well as a complementary literature that has examined indirect costs attributed to certain diseases or disease categories.
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From page 103... ...
Another issue with the available literature on direct and indirect costs of particular chronic diseases is that a given cost may be counted multiple times across different studies, for example, because of difficulty attributing particular direct or indirect costs to a given disease. This is a risk even across studies that have used approximately equivalent methodology.
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those with greater use of cost-effectiveness techniques; 2. more exploitation of methods used in determining national health accounts, but for specific and important chronic illnesses with long term outcomes; 3.
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2003. Descriptions of barriers to self-care by persons with comorbid chronic diseases.
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2003. External incentives, informa tion technology, and organized processes to improve health care quality for patients with chronic diseases.
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2011c. Public Health Action Plan to Integrate Mental Health Promotion and Mental Illness Prevention with Chronic Disease Prevention.
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2005. Socioeconomic differences in the prevalence of common chronic diseases: An over view of eight European countries.
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2003. Health literacy and knowl edge of chronic disease.
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2009. Economic hardship associated with managing chronic illness: A qualitative inquiry.
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2003. Caregiving and risk of coronary heart disease in U.S.
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2009. Patterns and risk factors associated with aromatase inhibitor-related arthralgia among breast cancer survivors.
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2004. Self-management interventions for chronic illness.
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1998. Social Isolation: The Most Distressing Consequence of Chronic Illness.
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2005. Caregiver burden in mental illness: Review of measurement, findings and interventions in 2004-2005.
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2005. Health literacy and functional health status among older adults.
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1997. An estimate of chronic disease burden and some economic consequences among the elderly Hong Kong popula tion.
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