Living Well with Chronic Illness: A Call for Public Health Action

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Chronic illnesses have emerged as major health concerns of Americans in recent decades. People are increasingly focused not simply on living longer, but on maintaining or even improving their capacity to live well over their entire lives.

In general, chronic illnesses are slow in progression and long in duration, and they require medical treatment. All chronic illnesses have the potential to limit the functional status, productivity, and quality of life of people who live with them. In addition, chronic illnesses are a major contributor to health care costs; the medical care costs of people with chronic illnesses represent 75 percent of the $2 trillion in U.S. annual health care spending.

The Centers for Disease Control and Prevention (CDC) and the nonprofit Arthritis Foundation sought assistance from the Institute of Medicine (IOM) to help identify public health actions to reduce disability and improve the function and quality of life for people living with chronic illness.

Addressing Major Public Health Problem

The IOM committee appointed to study the issue presents its findings in Living Well with Chronic Illness: A Call for Public Health Action. Among the findings of the IOM-appointed study committee:

• All chronic illnesses hold the potential to worsen the overall health of our nation by limiting an individual’s capacity to live well.
• Looking at a variety of diseases, health conditions, and physical impairments that significantly affect a person’s health and quality of life, as well as the nation’s economy, would strengthen public health actions to manage chronic disease.
• Evidence-based interventions aimed at preventing chronic disease (such as ending smoking, eating nutritious food, and limiting weight gain) need to be studied in people with one or more chronic illnesses to assess their effectiveness.
• While a range of public policies have helped individuals with chronic illness, it is important to design and implement new public policies or explore promising approaches to further promote living well with chronic illnesses.
• A comprehensive surveillance system to enhance living well with chronic illness is complex and integrates a number of health and quality of life measures.
• Enhanced collaboration among the public health, health care, and community non-healthcare sectors could produce better prevention and treatment outcomes for people living with chronic disease.

Living Well with Chronic Illness

For help selecting strategies with the greatest promise for improvement, the committee constructed an integrated framework built on a single guiding principle: that the aim of addressing the physical, social, and psychological toll of chronic illness is to help each affected person, and the population as a whole, to live well, regardless of the chronic illness in question or an individual’s own current state of health.

Figure: Strategies to Achieve Living Well

• Determinants of Health
  • Patterns of Health Determinants Over the Life Course
  • Genes
  • Biology
  • Behavior
  • Coping Response
  • Peers and Family
  • Socio-Cultural Context
  • Physical Environment
• Patterns of Health Determinants Over the Life Course ↔ Health Outcomes and Distribution in the Population
• Spectrum of Health
  • Health Outcomes and Distribution in the Population
  • Healthy
  • At Risk
  • Chronic Illness
  • Impairment
  • Functional Limitation
  • Disability
  • End of Life
  • Death
• Chronic Illness, Impairment, Functional Limitation, Disability, End of Life → Living Well with Chronic Illness
• Policies and Other Interventions at Individual and Population Levels
  • Population Surveillance
  • Public Policy
  • Media
  • Public Health
  • Community Orgs
  • Health Care
• Policies and Other Interventions at Individual and Population Levels → (Patterns of Health Determinants Over the Life Course ↔ Health Outcomes and Distribution in the Population)

The concept of living well reflects the best achievable state of health that encompasses all dimensions of physical, mental, and social well-being. 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 members, friends, and caregivers. In this way, progress toward living well can be achieved through the combined efforts of both individuals and society to reduce disability and improve functioning and quality of life, regardless of each unique individual’s current health status or specific chronic illness diagnosis.

The committee also acknowledges the challenges of determining how best to ensure that all policies, strategies, and interventions in all sectors effectively promote living well, as well as determining how to set priorities.

Recommendations for Action

The committee does not recommend a specific set of illnesses on which to focus public health action. Instead, it identifies nine “exemplar” conditions that are diverse yet have various factors in common, including significant effects on the nation’s health and economy. These are arthritis, cancer survivorship, chronic pain, dementia, depression, type 2 diabetes, posttraumatic disabling conditions, schizophrenia, and vision and hearing loss.

Given the great heterogeneity of chronic illnesses in different communities and populations, the committee recommends that the CDC select a variety of illnesses that merit public health action, including ailments that impair the health and physical function of people who live with that particular chronic illness. The CDC also should be careful not to duplicate existing public health efforts and should target its efforts to diseases where effective public health preventive strategies could be the most feasible or are the subject of promising research. The CDC’s chronic disease program evaluation also should encompass the best approaches to prevent or alter the course of new illnesses.

The committee recommends that the U.S. Department of Health and Human Services (HHS) support the states in developing comprehensive, population-based strategic plans with specific goals, objectives, actions, time frames, and resources that focus on managing chronic illness among residents, including community-based efforts to address the health and social needs of people living with chronic illness and experiencing disparities in health outcomes.

Among other actions recommended by the committee, federal and state governments should expand surveillance and mitigation programs to the widest possible range of chronic illnesses. Having better data will inform planning, development, implementation, and evaluation of public health policies, programs, and community-based interventions for individuals living with chronic illness.

The committee also recommends surveillance techniques that are likely to capture multiple chronic conditions effectively. As one example, the CDC should conduct longitudinal evaluations—which can shed light on hidden relationships—to identify and quantify the effects of various risk factors that could predict how a given illness will progress over time and how having a single chronic disease increases the odds of suffering from additional ailments.

Given the economic burden of chronic diseases to the United States, the CDC should support expanded use of new and emerging economic methods, such as cost-effectiveness techniques, in making policy decisions that promote living well with chronic illness. In terms of policy priorities, the committee suggests that HHS and the CDC pilot test a “Health in All Policies” approach on a set of major federal legislation, regulations, and policies and evaluate the framework’s ability to improve quality of life and physical function for people living with chronic illness. The “Health in All Policies” approach rests on the assumption that health is fundamental to every sector of the economy and that every policy—large and small—should take into consideration its effect on health. Also, the CDC should routinely examine and adjust its policies to ensure that community-based services for people living with chronic disease reflect the priorities embodied in health care and insurance reform legislation.

Conclusion

The epidemic of chronic illness is steadily moving toward crisis proportions, yet maintaining or enhancing quality of life for individuals living with chronic illnesses has not been given the attention it deserves by health care funders, health systems, policy makers, and public health programs and agencies. Moreover, the aging of the population will only increase coming challenges.

The committee’s recommendations provide immediate and specific actions to reduce the burden of chronic illness by developing and implementing cross-cutting, coordinated strategies to help Americans with chronic illnesses to live well. Their ultimate aim is to optimize efforts to better understand the burden and needs of people living with chronic illness, promote the creation and implementation of public health policies in emerging legislation, improve dissemination of effective community-based interventions, improve preventive clinical guidelines for people with chronic illness, and promote the testing of an aligned health system to help people live well with chronic illness.

Committee on Living Well with Chronic Disease: Public Health Action To Reduce Disability and Improve Functioning and Quality of Life

• Robert B. Wallace (Chair)
  University of Iowa, Iowa City
• Ronald T. Ackermann
  Northwestern University Feinberg School of Medicine, Chicago, IL
• Karen Basen-Engquist
  The University of Texas, MD Anderson Cancer Center, Houston
• Bobbie A. Berkowitz
  Columbia University School of Nursing, New York, NY
• Leigh F. Callahan
  The University of North Carolina at Chapel Hill
• Ronni Chernoff
  Geriatric Research Education and Clinical Center, Central Arkansas Veterans Healthcare System and Arkansas Geriatric Education Center, University of Arkansas for Medical Sciences, Little Rock
• David B. Coultas
  The University of Texas Health Science Center at Tyler
• Sherita Hill Golden
  Johns Hopkins University School of Medicine, Baltimore, MD
• Jeffrey R. Harris
  University of Washington School of Public Health, Seattle
• Russell Harris
  University of North Carolina at Chapel Hill
• Katie B. Horton
  The George Washington University School of Public Health and Health Services, Washington, DC
• M. Jeanne Miranda
  Center for Health Services Research, University of California, Los Angeles
• Marcia Nielsen
  Patient Centered Primary Care Collaborative, Washington, DC
• Olugbenga G. Ogedegbe
  New York University Lagone Medical Center
• Patrick Remington
  University of Wisconsin School of Medicine and Public Health, Madison
• David B. Reuben
  David Geffen School of Medicine, University of California, Los Angeles
• Michael Schoenbaum
  National Institute of Mental Health, Bethesda, MD

Study Staff

• E. Lorraine Bell
  Senior Study Director
• Pamela Lighter
  Research Assistant
• Chelsea Frakes
  Senior Program Assistant
• Andrew Lemerise
  Research Associate
• Hope Hare
  Administrative Assistant
• Amy Pryzbocki
  Financial Associate
• Rose Marie Martinez
  Senior Director, Board on Population Health and Public Health Practice

Study Sponsors

• Centers for Disease Control and Prevention
• The Arthritis Foundation

About this publication

Report Brief • January 2012

Institute of Medicine of the National Academies
Advising the nation • Improving health

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The Institute of Medicine serves as adviser to the nation to improve health. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policy makers, health professionals, the private sector, and the public.

Copyright 2012 by the National Academy of Sciences. All rights reserved.

Copyright 2012 by the National Academy of Sciences. All rights reserved.