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Committee on Pediatric Health and Health Care Quality Measures Board on Children, Youth, and Families Board on Health Care Services

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract No. HHSP23320042-509X1 between the National Academy of Sciences and the Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publica- tion are those of the author(s) and do not necessarily reflect the view of the organi- zations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-18623-0 International Standard Book Number-10: 0-309-18623-4 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap. edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2011 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 ad- opted 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). 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press.

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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 Coun- cil 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 PEDIATRIC HEALTH AND HEALTH CARE QUALITY MEASURES Gordon H. deFriese (Chair), Professor Emeritus of Social Medicine, Cecil G. Sheps Center for Health Service Research, University of North Carolina Paula a. Braveman, Professor of Family and Community Medicine, Director, Center on Social Disparities in Health, University of California, San Francisco Claire d. Brindis, Professor of Pediatrics and Director, Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco BarBara J. Burns, Professor of Medical Psychology and Director, Services Effectiveness Research Program, Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine Glenn Flores, Judith and Charles Ginsburg Chair in Pediatrics, Department of Pediatrics, University of Texas Southwestern Medical Center Gary l. Freed, Percy and Mary Murphy Professor of Pediatrics and Community Health, Department of Pediatrics, University of Michigan Health Systems deBoraH a. Gross, Leonard and Helen Stulman Endowed Chair in Mental Health and Psychiatric Nursing, Department of Acute and Chronic Care, School of Nursing, The Johns Hopkins University maxine Hayes, State Health Officer, State of Washington, Department of Health CHarles J. Homer, President and Chief Executive Officer, National Initiative for Children’s Healthcare Quality Kevin B. JoHnson, Professor and Vice Chair, Department of Biomedical Informatics, and Professor, Department of Pediatrics, Vanderbilt University School of Medicine Genevieve Kenney, Principal Research Associate, The Urban Institute marie C. mCCormiCK, Sumner and Esther Feldberg Professor of Maternal and Child Health, Department of Society, Human Development and Health, School of Public Health, Harvard University KatHryn m. mCdonald, Executive Director, Center for Primary Care and Outcomes Research, Stanford University School of Medicine miCHael J. o’Grady, Senior Fellow, Health Policy and Evaluation Department, National Opinion Research Corporation at the University of Chicago v

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alan r. Weil, Executive Director, National Academy for State Health Policy alan m. ZaslavsKy, Professor of Health Care Policy (Statistics), Department of Health Care Policy, Harvard Medical School Study Staff rosemary CHalK, Study Director Patti simon, Program Officer CHelsea Bodnar, Fellow (January to April 2010) yeonWoo leBovitZ, Research Associate (from November 2010) Wendy Keenan, Program Associate Julienne PalBusa, Research Assistant Pamella atayi, Senior Program Assistant vi

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Reviewers This report has been reviewed in draft form by individuals 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: Anne Beal, Aetna Foundation Mary Byrne, Stone Foundation and Columbia University School of Nursing Elena Fuentes-Afflick, Departments of Pediatrics and Epidemiology, University of California, San Francisco Darcy Gruttadaro, National Alliance on Mental Illness Child & Adolescent Action Center Kelly J. Kelleher, Office of Clinical Sciences, Columbus Children’s Research Institute, Ohio State University College of Medicine and Public Health Jonathan Klein, American Academy of Pediatrics and Julius B. Richmond Center of Excellence vii

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viii REVIEWERS Milton Kotelchuck, MGH Center for Child and Adolescent Health Policy, MassGeneral Hospital for Children, and Harvard Medical School Rita Mangione-Smith, University of Washington Center for Child Health, Behavior, and Development, Seattle Children’s Hospital Research Institute Karen A. Matthews, Pittsburgh Mind-Body Center, Department of Psychiatry, University of Pittsburgh School of Medicine Wilhelmine Miller, NORC at the University of Chicago Michael Msall, Developmental and Behavioral Pediatrics, University of Chicago Edward B. Perrin, Department of Health Services, University of Washington Sandeep Wadhwa, 3M Health Information Systems Deborah Klein Walker, Abt Associates Inc. C. Jason Wang, Department of Pediatrics, Boston University School of Medicine, and Department of Community Health Sciences, Boston University School of Public Health, Boston Medical Center 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 Paul J. Wallace, The Permanente Federation and Kaiser Permanente, and Nancy E. Adler, De- partments of Psychiatry and Pediatrics, and Center for Health and Com- munity, University of California, San Francisco. Appointed by the National Research Council and Institute of Medicine, they were responsible for mak- ing 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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Preface As the nation has invested in and made new commitments to programs offering health care services to children, child health advocates, policy makers, families, and the media have raised questions arise regarding the evidence to support claims that these efforts have led to improvements in the overall health status of children and adolescents or to a substantial increase in access to appropriate health care services for these populations. For those who use various categories of health care services, questions arise regarding the presumed impact on processes and outcomes of care. Even as recent legislation has enabled the expansion of child and adolescent health care services, concern persists as to whether significant gaps in access to these services exist and whether these gaps can be filled through a redirec- tion of resources to meet the health care needs of particular populations. All of these issues serve as the backdrop for the work of a committee convened by the Institute of Medicine (IOM) in fall 2009 to begin a year- long study of current national data systems pertaining to child and adoles- cent health status, health care access, and quality of care. The committee’s creation was one of the outgrowths of the reauthorization of the Children’s Health Insurance Program, enacted by the Congress in 2009. As it passed this important legislation, the Congress asked: “How can we know that our programmatic efforts are having the intended impact on the health of the nation’s children?” Embedded in this question are concerns about health care outcomes and eventual summative evaluations of the overall health of the nation’s children and adolescents, but also concerns about the ability to monitor, evaluate, and manage an expanding array of programs and services for ix

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x PREFACE these populations. The committee was asked to assess both the state and the science of child and adolescent health and health care quality measure- ment, as well as the capacity of existing data systems (particularly at the federal level) to track and evaluate programs and services intended to serve the health care needs of these populations, including the analytical capacity of federal and state agencies that use these data for these purposes. The 16-member committee formed by the IOM to address these issues comprised an array of experts from the fields of clinical pediatrics, health services research, health program evaluation and policy analysis, and the statistical and epidemiological sciences. The committee’s work was aug- mented by the expert assistance of four consultants—Patricia MacTaggart, Gerry Fairbrother, Jessica McAuliffe, and Lisa Simpson—whose work greatly facilitated dealing with specific issues related to child health and health care quality measurement. The committee is especially grateful for the assistance received from the staff of the IOM and the National Research Council, specifically from the Board on Children, Youth, and Families, whose director, Rosemary Chalk, served as principal study director for this study. Ms. Chalk is herself a widely known specialist on policy issues surrounding the health of children and is one of the most expert leaders of the processes through which a study of this kind takes place under the aegis of the National Academies. She was assisted by Patti Simon, program officer at the IOM, who was a mainstay in the committee’s communications and in the drafting of key chapters of the report. Other IOM staff who played key roles in assisting the commit- tee were Pamella Atayi, senior program assistant; Wendy Keenan, program associate; and Julienne Marie Palbusa, research assistant. The committee is grateful for the work of each of these individuals. In the course of this study, the committee concluded that the nation is fortunate to have a wide array of data sources and frequent analyses addressing the health and health care quality of children and adolescents, each providing a partial set of observations and benchmarks with which to answer some of the above questions of concern to the Congress and the American people. However, the patchwork of clinical information systems, periodic sample surveys, registries, and vital and health statistics reported by state and federal agencies does not facilitate the determination of reli- able and valid indicators of either health status or health care access and quality for the nation’s youth as a whole. The committee’s survey of existing data sets and methods for their analysis revealed the need for a national core set of salient measures (some of which may require new data defini- tions and approaches to collection). These measures need to be collected in every jurisdiction; analyzed using a standard methodological approach; and made available to the nation in a form that will enable policy makers, health care administrators and providers, and the general public to assess

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xi PREFACE the health status and access to quality care of children and adolescents and to determine whether and to what extent programs funded to provide health care services for these populations are achieving their goals. It is the committee’s hope that its recommendations and the logic underlying them will resonate with those whose efforts will be critical to answering this call in the coming years. Surely having a national data set of this kind will do much to sharpen the nation’s focus and resolve to do what is necessary to ensure the health of its greatest resource—its youth. Gordon H. DeFriese Chair Committee on Pediatric Health and Health Care Quality Measures

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Acknowledgments Beyond the hard work of the committee and project staff, this report reflects contributions from various other individuals and groups that we want to acknowledge. The committee greatly benefited from the opportunity for discussion with the individuals who made presentations at and attended the commit- tee’s workshops and meetings (see Appendix B). The committee is thankful for the useful contributions of these many individuals. This study was sponsored by the U.S. Department of Health and Hu- man Services, the Centers for Medicare and Medicaid Services, and the Agency for Healthcare Research and Quality. We wish to thank Barbara Dailey, Denise Dougherty, Marsha Lillie-Blanton, and Cindy Mann for their support. We would like to thank those who wrote papers that were invaluable to the committee’s discussions: Christina Bethell, Gerry Fairbrother (with col- leagues Jessica McAuliffe and Rachel Sebastian), Patricia MacTaggart, and Paul Newacheck. Thank you also to Brett Brown, whom we commissioned to provide a technical review of the report, and Michael A. Stoto, who provided guidance on report drafts. Together, their insight and expertise added to the quality of the evidence presented. Additionally, Rona Briere and Alisa Decatur are to be credited for the superb editorial assistance they provided in preparing the final report. xiii

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Contents SUMMARY 1 1 INTRODUCTION 15 Study Context, 15 Study Charge, Approach, and Scope, 17 Organization of the Report, 20 2 SETTING THE STAGE 23 Definitions, 23 Background, 30 Need for a Comprehensive Approach to Child and Adolescent Health, 42 Initial Observations on Current Data Systems Addressing Child and Adolescent Health and Health Care, 59 Summary, 65 3 CURRENT DATA COLLECTION METHODS AND SOURCES 67 Data Collection Methods, 69 Existing Data Sources, 72 Limitations of Existing Data Sources, 74 The Need for a Coordinated Approach to Integrate Measures of Child and Adolescent Health and Health Care Quality, 89 Summary, 90 xv

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xvi CONTENTS 4 EXISTING MEASURES OF CHILD AND ADOLESCENT HEALTH 91 Existing Measures of Child and Adolescent Health, 95 Timeliness, Quality, Public Transparency, and Accessibility of Data on Child and Adolescent Health, 124 Aggregating, Synthesizing, and Linking Multiple Data Sources, 124 Efforts to Make Data Meaningful by Linking Population Health Indicators and Public Health Interventions, 129 Summary, 130 5 MEASURES OF QUALITY OF CHILD AND ADOLESCENT HEALTH CARE 135 Purpose of Quality Measurement, 139 Critical Features of an Optimal Health Care Quality Measurement System for Children and Adolescents, 141 Initial Efforts to Develop a Measurement System for Quality of Care for Children and Adolescents, 142 Current Efforts to Improve the Measurement of Quality of Health Care for Children and Adolescents, 145 Adequacy of These Efforts to Achieve an Optimal System, 154 Promising State and Local Initiatives, 168 Summary, 172 6 CONCLUSIONS AND RECOMMENDATIONS 175 Conclusions, 176 A Stepwise Approach to Measuring Health and Health Care Quality for Children and Adolescents, 182 Step 1: Set Goals, 185 Step 2: Develop Annual Reports and Standardized Measures Based on Existing Data Sets, 191 Step 3: Create New Measures and Data Sources in Priority Areas, 196 Step 4: Improve Data Collection, Reporting, and Analysis, 202 Step 5: Improve Public and Private Capacities to Use and Report Data, 205 Final Observations, 207 REFERENCES 209

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xvii CONTENTS APPENDIXES1 A List of Acronyms 233 B Workshop Agenda and Participants 239 C Private-Sector Initiatives to Advance Health Care Quality and the Development of Quality Measures 245 D Overview of Data Sources for Measures of Health Care Quality for Children and Adolescents 251 E Biographical Sketches of Committee Members and Staff 263 F Population Health Data 273 G Administrative Data 289 INDEX 327 1 Only Appendixes A-E are printed in this volume. The other appendixes are included on the CD in the back of the report or online. Go to http://www.nap.edu/catalog.php? record_id=13084.

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