LIVING WELL

WITH CHRONIC ILLNESS

A Call for Public Health Action

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

Board on Population Health and Public Health Practice

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington D.C.
www.nap.edu



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LIVING WELL WITH CHRONIC ILLNESS A Call for Public Health Action Committee on Living Well with Chronic Disease: Public Health Action to Reduce Disability and Improve Functioning and Quality of Life Board on Population Health and Public Health Practice

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THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Contract No. DP000607 between the National Academy of Sciences and the Arthritis Foundation, and Contract No. 200-2005-13434, TO# 30 between the National Academy of Sciences and the Centers for Disease Control and Prevention. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Living well with chronic illness : a call for public health action / Committee on Living Well with Chronic Disease: Public Health Action to Reduce Disability and Improve Functioning and Quality of Life, Board on Population Health and Public Health Practice, Institute of Medicine of the National Academies. p. ; cm. Includes bibliographical references. ISBN 978-0-309-22127-6 (pbk.) — ISBN 978-0-309-22128-3 (pdf) I. Institute of Medicine (U.S.). Committee on Living Well with Chronic Disease: Public Health Action to Reduce Disability and Improve Functioning and Quality of Life. [DNLM: 1. Chronic Disease—prevention & control. 2. Health Policy. 3. Population Surveillance. 4. Quality of Life. WT 30] 362.1—dc23 2012012233 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20055; (800) 624-6242 or (202) 334-3313; http:// www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www. iom.edu. Copyright 2012 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2012. Living well with chronic illness: A call for public health action. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding en- gineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Insti- tute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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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 City LEIGH F. CALLAHAN, The University of North Carolina at Chapel Hill RONNI CHERNOFF, Geriatric Research, Education & 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, New York City 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 v

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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 PRZYBOCKI, Financial Associate ROSE MARIE MARTINEZ, Senior Director, Board on Population Health and Public Health Practice vi

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Reviewers This report has been reviewed in draft form by persons chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Susan Babey, University of California, Los Angeles, Center for Health Policy Research R. Don Blim, Retired Physician Executive Noreen M. Clark, University of Michigan Center for Managing Chronic Disease Christine C. Ferguson, George Washington University School of Public Health and Health Services George R. Flores, The California Endowment Linda P. Fried, Columbia University Joseph L. Mailman School of Public Health Patricia A. Ganz, University of California, Los Angeles, Jonsson Comprehensive Cancer Center Lisa I. Iezzoni, Harvard Medical School vii

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viii REVIEWERS Jerome P. Kassirer, Tufts University School of Medicine Jeffrey Levi, Trust for America’s Health Katie Maslow, Institute of Medicine Bernadette Melnyk, The Ohio State University College of Nursing David O. Meltzer, The University of Chicago Harris School of Public Policy Studies Anne Newman, University of Pittsburgh Graduate School of Public Health Marjorie L. Pearson, RAND Health S. Leonard Syme, University of California, Berkeley, School of Public Health Lorna E. Thorpe, CUNY School of Public Health at Hunter College Ed Wagner, University of Washington School of Public Health and Community Medicine Fredric D. Wolinsky, The University of Iowa College of Public Health Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Antonia M. Villarruel, University of Michigan, and Eric B. Larson, Group Health Research Insti- tute. Appointed by the National Research Council, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Foreword Chronic illness in America imposes an enormous and growing burden on individuals, families, communities, and the nation as a whole. An aging population is one key driver, and rising rates of obesity are making mat- ters worse. Insufficient physical activity and persistent smoking in about 20 percent of the adult population contribute to the problem. For those who are living with chronic disease, access to suitable disease management programs is uneven, disparities among racial and ethnic groups persist, and shortcomings in the quality of care are all too common. Public health programs have made important inroads in the preven- tion of several types of cancer, heart disease, and other chronic conditions. However, much remains to be done in primary prevention, initial treatment, and long-term follow-up to deter the onset of disease, reduce the incidence of complications, and diminish the severity of illness. This report examines the role of public health services in accomplishing these goals. Public health systems have a variety of tools that can be brought to bear on chronic illness. Some are direct public health functions, such as surveillance and regulation; others involve outreach to patients and families through education; some entail closer coordination with those who deliver personal health services; and still others involve enlisting the cooperation of diverse leaders in the public and private sectors. Despite substantial gaps in knowledge and insufficient resources, public health has the capacity to help reduce, manage, and control chronic diseases. This report shows how. Coping with chronic illness is not America’s challenge alone. In Septem- ber 2011, for the first time, the United Nations took up the topic of chronic diseases as a principal theme at a plenary gathering. The rising burden of ix

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x FOREWORD chronic disease affects countries at every position on the economic spec- trum. Each has much to learn from others, recognizing that differences in culture, conditions, and circumstances will demand distinctive solutions. We hope that the report that follows can help the United States bring new leadership to mitigating the burden of chronic illness at home and for the global community. Harvey V. Fineberg, M.D., Ph.D. President, Institute of Medicine

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Contents ABSTRACT xv SUMMARY 1 INTRODUCTION 21 1 LIVING WELL WITH CHRONIC ILLNESS 27 The Timely Relevance of a Push Toward Living Well with Chronic Illness, 28 The Population Health Perspective, 29 Chronic Diseases and Their Impact on Health and Function, 30 Doing Something About It, 33 Conclusion, 44 References, 45 2 CHRONIC ILLNESSES AND THE PEOPLE WHO LIVE WITH THEM 51 Introduction, 51 The Spectrum of Chronic Illnesses: Differences in Time Course/Chronicity, Health Burden, and Consequences, 52 The Spectrum of Chronic Illnesses: Common Consequences, 57 Exemplar Chronic Illnesses, 68 Who Are the People with Chronic Illnesses?, 90 Recommendations 1–5, 97 xi

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xii CONTENTS Chronic Illness and the Nation’s Health and Economic Well-Being, 100 Recommendation 6, 104 References, 105 3 POLICY 119 Introduction, 119 Contextualizing Health Policy Interventions: Frieden’s Pyramid, 124 The Affordable Care Act, 132 Health in All Policies and Health Impact Assessments, 137 Conclusion, 140 Recommendations 7–8, 141 References, 148 4 COMMUNITY-BASED INTERVENTION 151 Introduction, 151 Preventive Interventions, 151 Monitoring, Evaluation, and Research, 170 Conclusion, 174 Recommendations 9–12, 175 References, 176 5 SURVEILLANCE AND ASSESSMENT 187 Introduction, 187 Conceptual Framework for Chronic Disease Surveillance, 189 Use of Surveillance to Inform Public Policy Decisions, 194 Current Data Sources and Surveillance Methods, 195 Public Health Surveillance System Integration, 207 Future Data Sources, Methods, and Research Directions, 213 Conclusion, 220 Recommendations 16–17, 222 References, 222 6 INTERFACE OF THE PUBLIC HEALTH SYSTEM, THE HEALTH CARE SYSTEM, AND THE NON–HEALTH CARE SECTOR 229 Introduction, 229 Public Health System Structures and Approaches, 230 Health Care System Approaches, 238 The Community-Based and Non–Health Care Sector, 244 Conclusion, 250 Recommendations 13–15, 252 References, 253

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xiii CONTENTS 7 THE CALL FOR ACTION 257 References, 260 APPENDIXES A Improving Recognition and Quality of Depression Care in Patients with Common Chronic Medical Illnesses, 261 Wayne J. Katon B New Models of Comprehensive Health Care for People with Chronic Conditions, Chad Boult and Erin K. Murphy 285 C Agendas of Public Meetings Held by the Committee 319 D Committee Biographies 323

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Abstract The report Living Well with Chronic Illness: A Call for Public Health Action is a guide for immediate and precise action to reduce the burden of all forms of chronic illness through the development and implementation of cross-cutting and coordinated strategies to help Americans live well. The committee developed original and incorporated established con- ceptual models to provide a framework for the report. The report de- scribes the economic consequences of chronic illnesses for individuals, their families, the health care system, and the nation; provides a concerted approach to understanding the dimensions of prevention as they relate to chronic disease control in the community; highlights the populations that experience chronic illnesses disproportionately; considers a wide spectrum of chronic diseases and their clinical stages, their patterns and anticipated course, and the common or cross-cutting burden and consequences of living with chronic illness; details how to improve surveillance systems to better assess and address chronic illnesses; describes the role of public health and community-based interventions for chronic disease management and con- trol; considers the importance of federal policy in enhancing chronic disease control; and highlights the critical role of aligning public health, health care system, and non–health care community services as a system change to bet- ter control chronic illnesses. The committee concludes that all chronic illnesses have the potential to reduce population health by limiting individual capacity to live well. Maintaining or enhancing quality of life for individuals living with chronic illnesses has not been given the attention it needs by health care funders, health systems, policy makers, and public health programs and agencies. xv

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xvi ABSTRACT There are domains of chronic disease management from a public health perspective for which there is not enough research or program evaluation. Much more needs to be done. The committee does not recommend a specific set of diseases on which to focus for public health action. Instead, we describe nine exemplar dis- eases, health conditions, and impairments that have notable implications for the nation’s health and economy; impact quality of life and functional status; cut across many chronic illnesses; complicate and/or increase risks for multiple chronic conditions (MCCs); and impact the community, fami- lies, and caregivers of those with chronic illnesses. Each represents an im- portant challenge to public health. Therefore, the committee recommends that a variety of illnesses be selected for public health action based on a planning process that emphasizes the inclusion of chronic illnesses with cross-cutting clinical, functional, and social implications that impact the individuals who live with them. The committee provides specific criteria for illness selection. The committee concludes that there are many intervention issues and opportunities related to the prevention and management of MCCs. The committee recommends that surveillance techniques more likely to capture MCCs effectively be explored, and that public health interventions aimed at preventing or altering the course of new illness occurrences in individuals with MCCs, or who are at risk for them, be tested and evaluated. Also, the committee recommends that the states be supported to develop compre- hensive population-based strategic plans that focus on the management of chronic illnesses among their residents, including community-based efforts to address the health and social needs of individuals living with chronic illnesses and experiencing disparities in health outcomes. The committee recommends greater use of new and emerging economic methods in making policy decisions that will promote living well with chronic illnesses. In addition, the committee recommends that evidenced- based interventions that help individuals with chronic illness live well be widely disseminated, particularly in communities with disparities in health outcomes. Barriers for translating research into practice need to be identi- fied and resolved. Furthermore, the committee recommends that federal, state, and privately funded programmatic and research initiatives in health include an evaluation of their effect on health-related quality of life and functional status, particularly in persons with chronic illness. The com- mittee also recommends a Health in All Policies approach, with Health Impact Assessments as a promising practice to be piloted and evaluated for a set of major federal legislation, regulations, and policies for its impact on health, health-related quality of life and functional status for individuals with chronic illness, and relevant efficiencies.

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xvii ABSTRACT Surveillance systems need to be improved to assess health-related qual- ity of life and functional status and inform the planning, development, implementation, and evaluation of public health policies, programs, and interventions relevant to individuals living with chronic illness. There- fore, the committee recommends that a standing national work group be established to oversee and coordinate multidimensional chronic illnesses surveillance activity. To improve living well with chronic illness, the committee recommends the testing and evaluation of existing, emerging, and/or new models of chronic disease care that align the resources of community-based organiza- tions, the health care delivery system, employers and businesses, the media, and the academic community. Additional important recommendations are presented in this report regarding research and evaluation, interventions, policies, and surveillance to promote public health action around chronic illness.

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