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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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