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1
Living Well with Chronic Illness
Americans value health and the capacity to live with a sense of physi-
cal, mental, and social well-being. For many, having health also implies
access to social and personal resources that enable them to live well on a
day-to-day basis (WHO, 1986). Generally, people tend to place less value
on simply living longer if added years of life come without the security of
health and well-being. Indeed, there is a limit to people’s willingness to
accept physical and psychosocial discomfort or to compromise functional
independence, the capacity to enjoy relationships with others, or financial
security in exchange for longer life expectancy (Miller and Levy, 2000;
Tengs et al., 1995).
Chronic diseases are long-term health conditions that threaten well-
being and function in an episodic, continuous, or progressive way over
many years of life (NCCDPHP, [a]; WHO, [a]). Not only have chronic
diseases emerged as leading causes of death; they also represent enormous
and growing causes of impairment and disability (WHO, 2004). Tremen-
dous advances in public health and health care over the past century have
extended average life expectancies, but these advances have been compro-
mised by parallel increases in physical inactivity, unhealthful eating, obesity,
tobacco use, and other chronic disease risk factors (McGinnis and Foege,
1993; Mokhad et al., 2004; WHO, 2009). As a result of this combination,
more individuals are living longer but with one or more chronic illnesses
(HHS, 2010). In fact, living for many years with a chronic disease is now
common, and this presents a growing threat not only to population health
but also to the nation’s economic and social welfare. Although much work
is under way to address the burden of chronic disease, resources are limited
27
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28 LIVING WELL WITH CHRONIC ILLNESS
and the problem is growing. In this context, there is a clear danger that
these efforts will prove unsuccessful unless they can be prioritized, aligned,
and coordinated in a way that achieves the greatest benefit at a cost that
is acceptable to society. Addressing the toll of all chronic diseases, from a
population health perspective, is the subject of this report.
THE TIMELY RELEVANCE OF A PUSH TOWARD
LIVING WELL WITH CHRONIC ILLNESS
Chronic illnesses have always been a great burden not only to those liv-
ing with them but also to their societies and cultures, taking a tremendous
toll on welfare, economic productivity, social structures, and achievements.
Individuals with chronic illnesses have historically sought varied healers
and healing institutions in their communities to alleviate suffering, but over
past centuries there were few management aids for severe and progressive
conditions, and survivorship was often modest at best. This problem was
exacerbated by frequent lack of access to supportive or palliative care,
and death often came quickly. However, even in these unfortunate histori-
cal circumstances, the state, along with many nongovernmental organiza-
tions, played important roles in the response to chronic diseases, providing
almshouses and hospitals for impoverished, disabled, and otherwise sick
individuals who may not have had the fiscal or social resources to remain
in the community or who had been ostracized from community life because
of their conditions.
In the past century, extraordinary advances in developed countries in
medicine and public health, as well as economic growth leading to more
widely accessible social welfare programs, have changed the chronic disease
landscape dramatically. Hygienic and sanitary advances have prevented
many previously common diseases. Immunizations and clinical and commu-
nity interventions have substantially controlled many past causes of chronic
illness, such as tuberculosis and syphilis. Good progress in reducing tobacco
use has occurred, even if incomplete. Pharmacotherapy has enabled most
persons with chronic mental illnesses to be deinstitutionalized, even in the
absence of prevention or cure. Although there is more work to do, chronic
cardiovascular diseases have been diminished in many important ways.
Importantly, additional therapeutic approaches have improved the function
and overall health for some persons with chronic illnesses through advances
in corrective surgery, new approaches in analgesia, better rehabilitation and
physical and occupational therapy, improved nutrition management, and
adaptation of home and community environments for functionally impaired
persons.
Despite these advances, many community-wide problems with chronic
diseases remain major public health concerns. Individuals with congeni-
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29
LIVING WELL WITH CHRONIC ILLNESS
tal disabling conditions now survive longer into adulthood. Numerous
important chronic diseases still have no known or controllable causes
and continue unabated, such as mental illnesses, chronic skin conditions,
inflammatory bowel diseases, collagen vascular diseases, and degenerative
neurological illnesses. Chronic illnesses resulting from injuries or burns or
from infectious agents (e.g., hepatitis B and C, HIV, H. pylori) also continue
to take an important long-term toll on those affected. The control of many
chronic illnesses among young and middle-aged adults, even with some
important successes, has delayed the onset of these illnesses to older ages.
Amid medical progress, enhanced population survival has also permitted
the emergence of more degenerative illnesses at older ages, such as arthritis,
dementia, and end-stage kidney disease. Moreover, the availability and ap-
plication of more intensive medical therapies has increased treatment costs
and the probability of adverse events. Some examples include deep vein
thrombosis following joint replacement surgery for hip or knee arthritis;
increases in type 2 diabetes during treatment with some common mental
health medications; more cardiovascular events with intensive glucose low-
ering in some patients with diabetes; antibiotic resistant infections of kidney
dialysis catheters; and increased risk of falls or fractures among frail elders
treated with sedative-hypotic medications intended for improving sleep or
reducing agitation.
In addition, some population risk factors for chronic diseases are go-
ing in the wrong direction. Obesity levels have increased dramatically,
along with physical inactivity and unhealthful eating, accounting for a
considerable proportion of prevalent chronic diseases, such as diabetes
and cardiovascular diseases (McGinnis and Foege, 1993; Mokdad et al.,
2004). As a result, the average life expectancy for Americans living in most
U.S. counties has decreased over the past decade relative to gains being
made in other leading nations around the world (Kulkarni et al., 2011).
Thus, in the modern era, the toll of chronic diseases on physical, mental,
and social health, health care, and the economy continues to a problem
of critical magnitude in America today (Center for Healthcare Research
and Transformation, 2010; DeVol and Bedroussian, 2007; Michaud et al.,
2006; NCCDPHP, 2009).
THE POPULATION HEALTH PERSPECTIVE
Taking a population health perspective means considering the magni-
tude and distribution of health outcomes from the viewpoint of societal
groups or populations (Kindig, 2007). From such a perspective, genes,
biology, behavior, and environment are all seen to interact in their impact
on health and function. Older adults are biologically prone to being in
poorer health than adolescents because of the physical and cognitive ef-
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30 LIVING WELL WITH CHRONIC ILLNESS
fects of aging. Individuals can also inherit a higher probability of develop-
ing many illnesses, such as sickle cell anemia, breast cancer, heart disease,
and diabetes. People interact with one another and their environments
through behaviors that can also impact health. For example, a person who
is physically inactive is more likely to develop obesity, depressive illness,
heart disease, type 2 diabetes, and many cancers (HHS, 1996). Conversely,
an individual who quits smoking can reduce his or her risk of developing
heart disease, chronic obstructive lung diseases, and many cancers. Social
influences and the physical environments in which people are born, live,
learn, play, work, and age influence health in important ways. Educational
and job opportunities; poverty; social norms and attitudes; discrimination;
social support; exposure to mass media and technologies, such as the in-
ternet or cell phones; transportation options; and access to healthy foods,
safe physical activities, or health care services are all important examples of
environmental conditions that play important roles in determining health
and function.
CHRONIC DISEASES AND THEIR IMPACT
ON HEALTH AND FUNCTION
In 2005, 133 million Americans—almost half of all adults—had at least
one chronic illness, causing 7 in 10 deaths in the United States each year
(CDC, [a]). More than one in four Americans have concurrent multiple
chronic conditions (two or more) (MCCs) (Anderson, 2010), including, for
example, arthritis, asthma, chronic respiratory conditions, diabetes, heart
disease, HIV infection, and hypertension. Regardless of the severity, pattern
of effects, or duration of the disease, many diseases typically last at least a
year, require ongoing medical attention, and limit activities of daily living
(HHS, 2010).
“Morbidity” is a term commonly used to describe the burden of suf-
fering, in terms of impairment or disability, caused by an illness or health
condition. Morbidity can be measured at the individual level or summed
to reflect the aggregate health of a population. Chronic diseases cause con-
siderable population morbidity, which is reflected in often striking statistics
regarding the frequency of various complications and subsequent high levels
of health care utilization, health care costs, and missed days of work due to
illness or disability. The degree of population morbidity caused by a chronic
illness is often challenging to define, however, since some conditions are less
common but lead to devastating consequences, whereas others affect mil-
lions of individuals in more subtle yet meaningful ways. Chronic illnesses
also cause morbidity by impacting the quality of life of not only those
who have the condition but also their families, friends, and caregivers. For
society, chronic diseases take a large toll by imposing psychosocial stress,
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LIVING WELL WITH CHRONIC ILLNESS
lowering economic prosperity, and increasing costs in both the health care
and the public health sector (DeVol and Bedroussian, 2007; Thorpe, 2006).
In terms of a toll on quality of life, chronic disease morbidity can be
assessed along multiple dimensions, such as pain, fatigue, physical impair-
ment, lack of sleep, emotional distress, and decreased social health, or as a
summative effect across all of these dimensions (NIH, 2011). Not surpris-
ingly, different chronic diseases also impact dimensions of health in varied
ways. For example, both schizophrenia and rheumatoid arthritis have a
dramatic impact on the quality of life of individuals and their caregivers,
but the scope of those impacts is very different. Persons with schizophrenia
must deal with the stigma and often relapsing and remitting symptoms of
a lifelong mental illness, causing many to never reach such milestones as
getting married, having children, forming strong relationships with family,
or being gainfully employed. In contrast, persons with rheumatoid arthritis
suffer a variable course of physical concerns, changes in role function, and
loss of specific abilities that often increase over time. It is important to ap-
preciate the many facets of chronic disease morbidity and to recognize that
all chronic diseases, whether common or rare, are of considerable impor-
tance to those who are affected.
It is also important to recognize that the degree of impairment or dis-
ability imposed by a particular chronic illness is subject to change over time,
as the illness’s course and the affected individual’s coping responses evolve.
Some chronic diseases, such as arthritis or type 2 diabetes, begin to impact
quality of life even prior to their diagnosis, by causing psychological stress
or physical symptoms. Other diseases that are typically considered chronic,
such as high blood pressure or prediabetes, may continue for years without
symptoms or measurable signs of illness per se. Having these illnesses, how-
ever, can still cause various forms of impairment. For example, quality of
life can be reduced by the added stress of coping with the diagnosis itself, as
individuals must perform new and sometimes complex self-care behaviors
or to engage more intensively in health services designed to treat or prevent
complications of the condition. Moreover, despite even the best of inten-
tions, therapies for chronic illnesses can have unintended consequences,
such as increasing stress or physiological symptoms or even by causing
direct harm. Many of these consequences are easily overlooked. The full
spectrum of health and morbidity for persons with chronic illnesses has
been depicted previously in several frameworks (Nagi, 1965). By combining
these past frameworks in a way that highlights a perspective of popula-
tion health along the full spectrum of health and morbidity, the committee
constructed an integrated framework to serve as a reference for discussing
which strategies are likely to offer the greatest promise to improve health
for individuals living with chronic illness, depicted in Figure 1-1.
A key feature of this integrated framework is that a principal aim of
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32 LIVING WELL WITH CHRONIC ILLNESS
Determinants of Health Spectrum of Health
Socio-
Healthy
Cultural
Physical
Context
Peers and
Environment
Family
At Risk
Chronic
Illness
Coping
Patterns of Health
Response
Health Outcomes Impairment
Determinants and Distribution Living
Well with
Over the Life in the Functional
Chronic
Limitation
Behavior
Course Population Illness
Disability
End of
Biology
Life
Genes
Death
Policies and Other Interventions at
Individual and Population Levels
Public Public
Population Community Health
Media
Orgs
Policy Health Care
Surveillance
Strategies to Achieve “Living Well”
FIGURE 1-1 Integrated framework for living well with chronic illness.
SOURCE: Committee on Living Well with Chronic Disease: Public Health Action
to Reduce Disability and Improve Functioning and Quality of Life.
addressing chronic illness morbidity is to help each affected person and the
population as a whole to live well, regardless of the illness in question or
an individual’s own current state of disablement. The committee adopted
the concept of living well, as proposed previously by other chronic disease
experts (Lorig et al., 2006), to reflect the best achievable state of health
that encompasses all dimensions of physical, mental, and social well-being.
For each individual with chronic illness, to live well takes on a unique and
equally important personal meaning, which is defined by a self-perceived
level of comfort, function, and contentment with life. Living well is shaped
by the physical, social, and cultural surroundings and by the effects of
chronic illness not only on the affected individual but also on family mem-
bers, friends, and caregivers. In this way, progress toward living well can be
achieved through the combination of all efforts enacted across individual
and societal levels to reduce disability and improve functioning and qual-
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33
LIVING WELL WITH CHRONIC ILLNESS
ity of life, regardless of each unique individual’s current state of health or
specific chronic illness diagnosis.
This concept of living well, integrated within a broader population
health framework, is intended to promote a more holistic perspective
beyond the traditional focus on other important goals, such as primary
prevention or the prolongation of life expectancy alone. Moreover, it is in-
tended also to heighten awareness that interventions and policies that pro-
mote function, reduce pain, remove obstacles for the disabled, or alleviate
suffering at the end of life play an essential role in providing a more com-
plete response for addressing chronic diseases in the United States today.
DOING SOMETHING ABOUT IT
In this report the committee elected to use the “living well framework”
to inform the consideration of policies and the allocation of resources to
solve important issues related to chronic diseases in a manner that is tied
to a more complete understanding of the interactions among individual,
behavioral, social, and environmental characteristics. Specific strategies de-
signed to help individuals live well must also be considered in the context of
a broader array of activities targeting primary, secondary, and tertiary pre-
vention for all persons, regardless of whether they already have a chronic
illness (Figure 1-2).
Many strategies that are promoted for primary prevention, such as vac-
cination, tobacco cessation, physical activity promotion, healthful eating,
and injury prevention, can also help persons who have already developed a
chronic illness or disability to live more healthfully. In addition, strategies
that prevent or delay complications, build coping skills, improve function,
or alleviate pain and suffering may serve a dual purpose of reducing the
magnitude of illness burden over an individual’s remaining years of life as
well as reducing and/or delaying the development of additional compli-
cations or comorbidities in a way that serves to compress the period of
morbidity until later in life (Hubert et al., 2002). Indeed, it is likely that
the greatest societal benefit will emerge not from singular approaches, but
from a deeper understanding of how different approaches might be coor-
dinated to achieve the greatest progress toward living well for all persons
with chronic illness.
Regardless of their scale or focus, most policies or programs to improve
health require some form of investment that is both human and monetary.
Moreover, even strategies that yield overall societal benefits may have
adverse effects for some individuals or groups, including unforeseen and/
or unintended consequences. All strategies should be fashioned with care-
ful consideration of anticipated impacts, resource inputs, implementation
steps, and plans for surveillance of both intended and unintended conse-
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34 LIVING WELL WITH CHRONIC ILLNESS
Society Laws, Regulation, and Resource Distribution
Community Design
Education and Awareness
Cues and Prompts
Social Support and Coping Resources
Intervention
Level
Behavioral Prevention Programs Care and Disease Management
Case Management
Tailored Pharmaceutical Treatment
Surveillance and Prevention of Complications
Detection Assisted Living End of Life Planning
Individual
Healthy Chronic Condition Impaired Disabled End of Life
Health Spectrum
FIGURE 1-2 Interaction of multilevel interventions and policies to achieve living
well across the spectrum of health and chronic disease.
SOURCE: Adapted from Copyright 1-2.eps J.E., and S.M. Teutsch. 2011. An
© Fielding,
opportunity map for societal investment in health. Journal of the American Medical
Association 305(20):2111. All rights reserved.
quences. In this report, we attempt to highlight important considerations of
a thoughtful population health approach for living well with chronic illness.
Before introducing those concepts, however, it is important first to consider
the evolution of American strategies designed to understand illness burden
and how existing resources and strategies available to promote popula-
tion health might help to guide the nature and scope of future living-well
interventions.
A Brief History
The capacity of society to respond to health threats, chronic or oth-
erwise, is influenced by the way in which it documents and interprets the
magnitude and distribution of health outcomes. From its earliest colonial
beginnings, Americans have paid particular attention to such life events as
births, marriages, and burials as a part of religious or cultural traditions.
At the outset, disease ranked with starvation as a primary threat to the
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LIVING WELL WITH CHRONIC ILLNESS
existence of many of the colonies. Infectious outbreaks, such as malaria,
dysentery, typhoid, smallpox, and yellow fever, decimated many early co-
lonial settlements (CDC and NCHS, [a]). Outbreaks of disease were met as
emergencies with varied responses.
In the years just prior to the turn of the 19th century, large cities, such
as Baltimore and Philadelphia, established boards of health as the fore-
runners of modern local health departments. Those boards attempted to
introduce more systematic, population-based efforts to identify and track
causes of serious health threats and to guide the public health response
to epidemics. During the mid-19th century, states began enacting laws to
expand and improve approaches to track causes of death. In 1879, the
U.S. Congress created the National Board of Health, tasked to centralize
information, engage in sanitary research, and collect vital statistics. Over
time, the methods for documenting and interpreting the numbers and more
precise causes of deaths in America continued to evolve, and this ultimately
led to the establishment of the National Office of Vital Statistics of the
Public Health Service in 1946 and the National Center for Health Statistics
(NCHS) in 1963. Since that time, NCHS has produced reports of vital sta-
tistics and has worked with other agencies to advance methods to capture
and analyze population health in America.
For the past half-century, efforts by organizations, such as the CDC
(including NCHS), the World Health Organization (WHO), the National
Institutes of Health (NIH), the Agency for Healthcare Research and Quality
(AHRQ), and others, have used data from an evolving list of population
health indicators to inform a variety of strategies by governmental public
health entities, community-based nongovernmental organizations, and the
health care system to address illness and promote health and function.
Recently, the increasing burden of chronic diseases globally has ex-
panded the attention of these efforts to focus well beyond simply prolong-
ing life, with an increasing emphasis on wellness and function. Implicit in
this shift is a growing recognition that American society places less value on
a longer life if additional years also bring additional pain and suffering or
leave individuals without a capacity for independent decision making, the
ability to perform activities of daily living independently, or enjoy relation-
ships or financial security.
Today HHS, through CDC, AHRQ, NIH, and other centers, routinely
tracks data and publishes reports on such outcomes as health behaviors;
biological indicators of health; health care access, quality, utilization, dis-
parities, and costs; prevalence of diseases; and vital statistics (BRFSS, [a];
CDC and NCHS, [a]; HCUPnet, [a]; MEPS, [a]). Beginning in the mid-
1990s, the U.S. Council of State and Territorial Epidemiologists (CSTE)
began working with epidemiologists and chronic disease program directors
at the state and federal levels to select, prioritize, and define 73 chronic
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36 LIVING WELL WITH CHRONIC ILLNESS
disease indicators. These data are intended to summarize available infor-
mation from surveys, registries, and other surveillance systems about the
incidence, prevalence, events, and efforts to detect and treat select chronic
diseases and their behavioral risk factors (CDC, [a]). The first set of indica-
tors was published in 1999, with state-specific data published the following
year. In 2001, the content of both reports became available online. In 2002,
the CSTE adopted a revised and expanded set of indicators. Although this
reflects progress in shining light on the magnitude of morbidity imposed by
chronic illnesses, the current efforts do not encompass all chronic diseases
and do not capture many of the meaningful negative effects on quality of
life caused by different forms of functional impairment and disability.
Since 2004, NIH has funded the development of the Patient Reported
Outcomes Measurement Information System (PROMIS) to create, test,
and recommend a more uniform set of tools for the measurement and
surveillance of patient-reported health status indicators reflecting physical,
mental, and social well-being (PROMIS, [a]). Although evidence-based and
publicly accessible, PROMIS and similar tools have not yet been adopted
more broadly for surveillance of quality of life or well-being for the U.S.
population.
In parallel with PROMIS, other initiatives have tried to consider how
population health indicators could be measured practically and used to in-
form local policies to address chronic disease (Parrish, 2010; Wold, 2008).
Some examples of this work include the IOM’s State of the USA Health
Indicators report (2008) and the University of Wisconsin’s Mobilizing Ac-
tion Toward Community Health (MATCH) Project (Kindig et al., 2010).
Although these initiatives are attempting to advance the capacity to under-
stand the impact of chronic diseases and their risk factors on population
health, practical considerations have led them to recommend only very brief
metrics that are already being collected and are in the public domain. An
example of one such metric is CDC’s HRQOL-4, which has been collected
at the state level since 1993. Although readily available today, this metric
lacks specific information about activity limitation, functional status, and
experiential state. Over the coming decade, one key goal for the Healthy
People 2020 initiative is to evaluate the use of PROMIS and other avail-
able metrics for monitoring health-related quality of life and well-being in
the United States (Healthy People 2020, [a]). Indeed, as discussed through-
out this report, without the implementation of a more robust system for
population-level surveillance of indicators that reflect the full depth and
distribution of chronic disease morbidity on different dimensions of quality
of life and well-being, it will prove challenging to prioritize, evaluate, and
refine strategies that aim to help all Americans to live well with chronic
illness.
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LIVING WELL WITH CHRONIC ILLNESS
Summary Measures of the Burden of Chronic Illness
In addition to considering the societal burden of chronic disease in
terms of specific dimensions of health status, well-being, social participa-
tion, or survivorship, methods are also available to quantify morbidity
using summary measures that combine information on both mortality and
nonfatal health outcomes into a single numerical index (Murray et al.,
2002). Such measures are broadly intended to quantify not only mortality
but also the impact of impairment or disability on population health when
individuals are living with a particular illness. Typically, these summary
measures express “either the expected number of future years of healthy life
after a given age or the number of years that chronic disease and disability
subtract from a healthy life” (Parrish, 2010).
One example of a population-health summary measure, developed by
the WHO, expresses health states in terms of disability-adjusted life-years
(DALYs), in which one less DALY is equal to the loss of one healthy life-
year. The impact of a particular chronic health state on disability is often
estimated from information collected from individuals in the population
and then summed to reflect the burden of a particular disease on a group
or population. In this context, the DALY burden or human toll associated
with a given illness for a population becomes a function of the numbers
of persons affected; the age at onset, the pattern of its natural history (i.e.,
duration, chronicity, and episodic nature); and its effects over time on dis-
ability, functioning, and premature mortality. Based on the DALY metric,
Michaud and colleagues reported in 2006 that noncommunicable diseases
cost the United States 33.1 million DALYs per year, based on data collected
by WHO. Common chronic illnesses, including ischemic heart disease,
cerebrovascular disease, major depression, chronic obstructive pulmonary
disease, asthma, HIV, diabetes mellitus, osteoarthritis, and chronic neu-
rological disorders together accounted for about 35 percent of this total,
which corresponds to about 16 days of healthy life lost for every person in
the U.S. population that year (Michaud et al., 2006).
Another common way to express the summative impact of chronic dis-
eases for a population is through a cost of illness approach, which attempts
to monetize the direct and indirect financial costs incurred by society for a
particular chronic disease. The cost of illness method typically views direct
costs as those associated with health care per se (e.g., clinic visits, hospital-
izations, medications, medical devices, and therapy/rehabilitation services
as well as public health initiatives focused on primary or secondary preven-
tion). Conversely, indirect costs are those that are incurred through effects
on premature mortality, reduced labor output (including consideration of
public and private income assistance programs, which serve to replace labor
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40 LIVING WELL WITH CHRONIC ILLNESS
represent dominant risk factors for the development and progression of
chronic diseases. In the United States, tobacco use is the most preventable
cause of disease and disability (CDC, 2011). Over 8 million Americans have
a disease or disability caused by smoking (Hyland et al., 2003). Smoking
is related to a wide range of chronic diseases, including chronic obstruc-
tive pulmonary disease, coronary heart disease, stroke, peripheral vascular
disease, and peptic ulcer disease (Fagerström, 2002). There is an increased
prevalence of tobacco use among lower income individuals. Almost 30
percent of adults living below the poverty line smoke, compared with 18.3
percent of adults who are at or above the poverty line. In addition, tobacco
use increases in populations with less education. Just over 25.1 percent of
adults who do not have a high school diploma smoke, whereas 9.9 percent
of college graduates smoke, compared with only 6.3 percent of adults with
a graduate degree (CDC, 2011). American Indians/Alaskan Natives have
the highest prevalence of smoking at 31.4 percent (CDC, 2011).
The distributions of obesity show a very different pattern, varying both
by race/ethnicity, SES, and gender. Socioeconomic status, defined by edu-
cational levels and income, is linked to obesity (McLaren, 2007). In 2001,
31.1 percent of blacks and 23.7 percent of Hispanics were obese, compared
with 19.6 percent of white Americans and 15.7 percent of others, including
Asians. A similar range is shown by education, for which 15.7 percent of
college graduates are obese compared with 27.4 percent of those who did
not graduate from high school (IOM, 2006). Obesity is more prevalent in
women with lower income. And 42 percent of women living at 130 percent
of the poverty level or below are obese, compared with 29 percent living at
or above the poverty level (CDC, 2010a).
Underlying population differences in social and environmental condi-
tions affect racial and ethnic inequalities in distributions of chronic disease
risk factors and morbidity, not genetic factors alone (IOM, 2006). Although
health care plays a crucial role in the treatment of disease, disparities in
health care are estimated to account for only a small fraction of premature
mortality among racial and ethnic minorities. On average, disadvantaged
ethnic minorities complete fewer years of formal education, have lower in-
come, and are less likely to have health insurance. This leads to less access
to beneficial health services and an overall lower quality of care received
(IOM, 2003). Disadvantaged individuals have greater exposure to crowd-
ing and noise (Kawachi and Berkman, 2003), constrained conditions for
exercise, and less access to well-stocked grocery stores (McGinnis et al.,
2002). In contrast, social environments with more social capital and social
cohesion are more available in advantaged communities (Cohen et al.,
2003; Kawachi and Berkman, 2000). In this context, it is imperative that
strategies to improve living well with chronic illness consider the potential
impact on distributions of health outcomes across population subgroups,
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LIVING WELL WITH CHRONIC ILLNESS
as well as the way in which policies across other sectors, such as education,
transportation, farming, and other areas, can indirectly impact health and
contribute to disparities in health.
Frameworks to Guide Action Across Sectors
It can be daunting to consider how best to ensure a policy development
process that promotes population health while considering the unequal dis-
tributions of chronic disease burden as well as the potential ripple effects
when policies from different sectors collide. In this context, the committee
thought it helpful to introduce another concept, which depicts a pyramid
of layered intervention strategies to achieve living well (Figure 1-3). This
pyramid attempts to frame different potential intervention strategies not
only in terms of their target level (i.e., population-wide versus individu-
ally based) but also in terms of their relative intensity to meet the needs of
those who shoulder the greatest burden of nonfatal chronic illnesses. This
framework is used in subsequent chapters to communicate the nature and
Priority Pyramid Intervention Targets
High-intensity interventions
designed specifically to address
the unequal burden of chronic
disease in high-priority groups
Intensive strategies aligning
Refinement
health care and non–health care
guided by
sectors to maximize quality of life
coordinated
and reduce complications
surveillance
of living well
Community-wide strategies that
link with health care to support outcome
self-care, provide risk factor treat-
metrics
ment, and prevent complications
Environmental and population-
based policy interventions to
support healthy living and
primary prevention
1-3.eps
FIGURE 1-3 Prioritization scheme for policies and other interventions to address
the burden of nonfatal chronic diseases across the population.
SOURCE: Committee on Living Well with Chronic Disease: Public Health Action
to Reduce Disability and Improve Functioning and Quality of Life.
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42 LIVING WELL WITH CHRONIC ILLNESS
scope of different policy and other intervention recommendations made by
the committee.
At the base of the priority pyramid are broad societal strategies to
promote health and prevent disease for the entire population. At the very
broadest level is the Health in All Policies (HIAP) perspective. This per-
spective acknowledges that health is fundamental to every sector of the
economy and that every policy, large and small, whether focused primarily
on transportation, education, agriculture, energy, trade, or another area,
should take into consideration its impact on health (Aspen Institute, [a];
Blumenthal, 2009). Clearly, achieving such a goal is no trivial pursuit and
is likely to require top-down coordination of policy sectors at the national,
state, and local levels (The Strategic Growth Council, [a]) as well as a
shared sense of participation and accountability among individuals, groups,
institutions, businesses, communities, and governments to preserve, protect,
and advance population health at every level. WHO and numerous other
entities worldwide have promoted the development of frameworks and
strategies to advance the HIAP perspective (WHO, [a]). From an opera-
tional perspective, the implementation of such a high-level and coordinated
focus on health is likely to take considerable time to mature and will clearly
require fundamental changes in policy development processes across both
governmental and private sectors.
With slightly more focus, the acceleration of public and health system
policies specifically intended for promoting health through the support of
healthier lifestyle behaviors and access to evidence-based preventive services
is also urgently needed. Although dedicated health policies are also typi-
cally directed at a population level, it is important to recognize that they
can have meaningful (and often greater) benefits for individuals already
affected by a chronic illness or high-risk condition (e.g., high cholesterol,
prediabetes). Moreover, the presence of policies that enhance support and
accessibility can amplify the impact of other environmental, social, and
health care resources to help chronically ill persons live more healthful and
higher quality lives. In this context, policy interventions serve as the very
foundation of the priority pyramid and are discussed in greater depth in
Chapter 3.
Moving up the priority pyramid, it is important to recognize that in-
dividuals who have already been diagnosed with a chronic illness can also
benefit from access to additional care management and support resources in
both health care and non–health care sectors. Such resources may include
more intensive risk factor surveillance, medication therapies, medical pro-
cedures, educational and behavioral programs, and other support systems.
The intensity of these resources needs increases among individuals who
have MCCs and those who have progressed to develop impairment or dis-
ability. Exposure to multiple care providers and use of care management
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LIVING WELL WITH CHRONIC ILLNESS
resources in multiple settings, though often needed, may introduce new
problems if poorly aligned or fragmented. Poor coordination of services
for the chronically ill can lead to care that, although intensive, is both inef-
fective and wasteful. Moreover, such care can also increase the possibility
of harm caused by conflicting therapies or poor communication among
affected individuals and providers (IOM, 1999).
Because many treatment and self-care resources for persons with
nonfatal chronic illnesses can be complementary, they are likely to offer
the greatest benefit for an individual and for the population if they are
coordinated across sectors in ways that reach more individuals, reinforce
behaviors throughout communities, provide the most efficient use of lim-
ited resources, and avoid harms. For several years, professionals in both
the health care and the public health sector have worked to develop and
evaluate frameworks for the coordination of resources to prevent and man-
age chronic diseases. The Chronic Care Model (CCM), for example, is a
conceptual framework designed to identify structural elements in the health
system that are believed to impact chronic disease outcomes through their
ability to create productive interactions among informed, activated patients
and prepared, productive care providers. Increasingly, the CCM is being
used as a foundation for efforts to define the model elements of a patient-
centered medical home (NCQA, [a]) and to guide broader concepts related
to transformation of health systems into “accountable care” organizations.
In this context, the CCM is an important consideration in the discussion
of how best to implement strategies that will transform the structure and
process of health care delivery.
Although used initially as a tool to improve chronic health care ser-
vices, the CCM does attempt to overlay health care delivery on a broader
landscape of community resources and policies. Since its initial introduction
in the 1990s, several groups have attempted to refine the CCM to place
even stronger emphasis on community influence and prevention (Barr et
al., 2003). One such adaption, the Expanded Chronic Care Model (Barr et
al., 2003), depicted in Figure 1-4, advances the perspective that care model
elements bridge across health care and non–health care sectors and that an
overarching goal of those bridging support structures and programs is to
improve population health outcomes not only by impacting the health and
behaviors of individual patients and their health care providers but also by
activating communities and preparing community partners.
Although integration frameworks, such as the Expanded Chronic Care
Model, may prove helpful in coordinating care resources for persons with
nonfatal chronic illnesses, much more work is needed not only to un-
derstand the best approaches for developing clinical-community linkages
(Ackermann, 2010; Etz et al., 2008) but also to guide higher level strategies
that ensure an efficient interface across policy sectors and among public and
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44 LIVING WELL WITH CHRONIC ILLNESS
Community
Build Healthy
Public Policy
Health System
Create
Supportive
Environments
Information
Self-Management/
Strengthen Systems
Delivery System
Develop
Decision
Community Design/
Personal Skills
Support
Re-orient Health
Action Systems
Prepared
Productive
Informed Prepared
Activated Proactive
Proactive
Interactions and
Activated
Community Patient Community
Practice
Relationships Partners
Team
Population Health Outcomes/
Functional and Clinical Outcomes
FIGURE 1-4 The Expanded Chronic Care Model.
SOURCE: Barr, V., S. Robinson, 6-2.eps
B. Marin-Link, L. Underhill, A. Dotts, D.
Ravensdale, and S. Salivaras. 2003. The expanded chronic care model: An integra-
tion of concepts and strategies from population health promotion and the chronic
care model. Healthcare Quarterly 7(1):73–82.
private partners to advance population health and living well with chronic
illness on a much larger scale. It is the position of the committee that such
progress will require not only new structures and processes for collab-
orative policy development but also the careful alignment of incentives to
promote accountability toward population health and greater coordination
of efforts to achieve that goal. A more robust description of interventions
in communities and strategies for coordinating interventions across non–
health care and health care settings appears in Chapters 4 and 6.
CONCLUSION
The burden of chronic disease in America today is indeed vast and con-
tinues to grow. The sheer magnitude of this burden for society; the striking
inequalities in living well among minorities, the elderly, and the disadvan-
taged; and the simple fact that numerous chronic diseases are leading causes
of death and disability are all emblematic of the considerable limitations of
existing policies, programs, and systems of care and support for Americans
living with chronic illness today.
New strategies for understanding and addressing this burden must give
ample consideration to all chronic illnesses and all dimensions of suffering.
Indeed, all chronic diseases have the potential to reduce population health
not only by causing premature death but also by limiting people’s capacity
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45
LIVING WELL WITH CHRONIC ILLNESS
to live well during the remaining years of their lives. For society, living well
is impacted not only by the numbers of persons who suffer from chronic
illnesses but also by the effects of those illnesses on their quality of life and
that of their peers, caregivers, children, and dependents. In this context, the
overall burden of chronic diseases could be drastically reduced through co-
ordinated efforts toward both primary prevention and other interventions
and policies that are designed to improve health for persons already living
with chronic illness. Although both of these overarching goals are essential
to the health of America, the remainder of this report focuses on the goal
of living well with chronic illness.
In the chapters that follow, the committee consistently adopts a popu-
lation health perspective to guide discussions of how individuals’ genes,
biology, and behaviors interact with the social, cultural, and physical envi-
ronment around them to influence health outcomes for the entire popula-
tion. Subsequent chapters consider and recommend practical steps toward
advancing efforts to coordinate action across sectors to help society live
well with all forms of chronic illness and to address gaping inequalities in
their distribution and their complications among vulnerable population
subgroups. Because different chronic illnesses impact social participation
and quality of life in varied ways, the committee also uses examples of dif-
ferent chronic diseases to illustrate key concepts. This, however, should not
be viewed as an assertion that some diseases are more burdensome or more
important than others. In the end, it is our hope that this report will guide
immediate and precise action to reduce the burden of all forms of chronic
disease through the development of cross-cutting and coordinated strategies
that can help all Americans to live well.
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