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1
Introduction
The true measure of a nation’s standing is how well it attends to its chil-
dren—their health and safety, their material security, their education and
socialization, and their sense of being loved, valued, and included in the
families and societies into which they are born.
—Child Poverty in Perspective:
An Overview of Child Well-Being in Rich Countries
(UNICEF, 2007)
America’s children are its greatest resource, and measures of child
health are important indicators of the overall health and future prospects
of the nation as a whole (CDC, 1991; Klein and Hawk, 1992; Nersesian,
1988; Reidpath and Allotey, 2003). Ensuring the health, safety, and well-
being of children—at each critical stage of development—is a responsibility
shared among individuals and families and across institutions and govern-
mental jurisdictions. The vast number of public health initiatives, individual
actions, community activities, advocacy campaigns, child- and adolescent-
targeted programs and research, and policies and legislation focused on
children would suggest the nation’s desire to distinguish children’s health
as one of the highest national priorities.
STUDY CONTEXT
Monitoring the status of the health of children and adolescents is
important because health matters both in and of itself—as a measure of a
society’s values and capabilities—and as a direct determinant of subsequent
productivity and later longevity. Assessing the impact of policies, programs,
and services that may influence child and adolescent health requires timely,
high-quality, readily accessible and transparent indicators. Such informa-
tion can be used to determine the relative health of the nation’s children
and adolescents; to support analyses of the health and access to high-quality
health care services of selected population groups defined by geography,
race/ethnicity, socioeconomic status, or other characteristics; and to drive
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16 CHILD AND ADOLESCENT HEALTH
improvements in the quality of health care and other services so they can
contribute to better health outcomes for children and adolescents.
Progress has been made in selected areas to improve measures of health
and health care quality for younger populations, and interest is growing in
developing standardized measures that could yield the information needed
in these areas. The time is ripe, therefore, for a comprehensive strategy that
can make better use of existing data, offer a basis for integrating or linking
different data sources, develop new data sources and data collection meth-
ods for difficult-to-measure indicators and difficult-to-reach populations,
and put a system in place for continuously improving the measures and the
measurement system.
Several factors make this a particularly opportune time to mount an
effort to strengthen existing measures and improve areas that require in-
creased attention. First, Congress has emphasized improving health care
quality as a strategy for obtaining greater value from public investments
in health care services. Second, the health and health care of children and
adolescents have become a particular focus as younger populations enrolled
in public health plans such as Medicaid and the Children’s Health Insurance
Program (CHIP) have grown significantly. Third, the percentage of U.S.
children and adolescents (under age 18) who live in poverty increased from
18 percent in 2007 to an estimated 20.7 percent (or 15.5 million children)
in 2009 (DeNavas-Walt et al., 2010). The percentage is even higher among
younger children (under age 6) and among children in selected geographic
areas, such as rural communities or central city regions (Mattingly and
Stransky, 2010).
Taking additional steps to improve health status and ensure quality
health care for all U.S. children and adolescents is essential to achieving
both optimal individual health and a healthy future for the nation. The
health status of children and adolescents not only is an important determi-
nant of their well-being, but also contributes to their school performance
and their ability to become successful, productive, and healthy adults.
Moreover, because children are dependent upon their adult caregivers, their
families also bear the burden of inadequacies in access to and quality of
health care services. Yet there are many indications that health and health
care quality for the nation’s youth fail to measure up to child and adolescent
health outcomes and standards of care in many other developed countries
(OECD, 2010a). Despite a broad array of efforts and significant invest-
ments in children’s health, U.S. children and adolescents lag well behind
their counterparts in other industrialized nations. According to UNICEF’s
report, Child Poverty in Perspective: An Overview of Child Well-Being in
Rich Countries, the United States was in the bottom third of the rankings
for material well-being, health and safety, educational well-being, family
and peer relationships, and behaviors and risks (UNICEF, 2007). One pos-
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17
INTRODUCTION
sible explanation for the health lag is the severe disparities in socioeconomic
status found in the United States (IOM and NRC, 2004). The United States
also ranks at or near the bottom among industrialized countries on infant
mortality and life expectancy (OECD, 2010b; Peterson and Burton, 2007).
In 2004, the latest year for which comparable data are available, the United
States had a higher infant mortality rate than 28 countries—including Sin-
gapore, Japan, Cuba, and Hungary—compared with 1960, when the U.S.
infant mortality rate was higher than that of only 11 countries (NCHS,
2004). Evidence derived from meaningful data collection provides a plat-
form for engaging a variety of stakeholders, including families and provid-
ers, in prioritizing and mobilizing for collective actions aimed at improving
the health of the nation’s youth.
STUDY CHARGE, APPROACH, AND SCOPE
These observations come at a time of great emphasis on the health of
America’s children as the U.S. Congress has passed, and President Obama
has signed, the Children’s Health Insurance Program Reauthorization Act
(CHIPRA) of 2009. An important part of this reauthorization was a provi-
sion that the U.S. Department of Health and Human Services fund a study
by the National Academies “on the extent and quality of efforts to measure
child health status and the quality of health care for children across the age
span and in relation to preventive care, treatments for acute conditions,
and treatments aimed at ameliorating or correcting physical, mental, and
developmental conditions in children.”
The reauthorization of CHIP occurred just a few months before the
enactment of the Patient Protection and Affordable Care Act and the Health
Care and Education Reconciliation Act of 2010, signed by the President
on March 30, 2010. The latter two pieces of legislation include provisions
(both direct appropriations and authorizations) related to all three compo-
nents of what most would consider the three principal elements of health
care reform—access, quality, and cost. Taken together, these three pieces
of legislation have major implications for the health of America’s children
and adolescents, although the latter two are broadly relevant to the health
of and health care available to all Americans.
After the enactment of CHIPRA and in anticipation of the enactment of
broader health care reform legislation some months later, the Congress di-
rected attention in CHIPRA to two key questions: “How can we know that
our programmatic efforts are having their intended impact on the health of
the nation’s children and adolescents?” and “Do we have data collection
and analysis systems in place that would enable the accurate and timely
assessment of the effectiveness and impact of those programs and services
now made available to children and adolescents?” These questions reflect
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18 CHILD AND ADOLESCENT HEALTH
not only expectations that we can ascertain the short- and longer-term im-
pacts of health care services and programs, but also expectations that we
can effectively monitor the developmental aspects of child and adolescent
health needs, health status, access to care, and important functional health
outcomes to enable meaningful adjustments to these services and programs
as they unfold over time.
Study Charge
The National Academies, specifically the Institute of Medicine (IOM)
and the National Research Council (NRC), was contracted (by the Centers
for Medicare and Medicaid Services [CMS] and the Agency for Healthcare
Research and Quality [AHRQ]) to carry out a year-long study “to identify
key advances in the development of pediatric health and health care quality
measures, examine the capacity of existing federal data sets to support these
measures, and consider related research activities focused on the develop-
ment of new measures to address current gaps.” This study, documented
in this report, is part of an expanded effort within CMS and AHRQ to
improve health outcomes and the quality of health care services for children
and adolescents served by Medicaid and CHIP. The study was intended to
complement these efforts by highlighting not only indicators of child health
status and quality health care, but also the infrastructure that can support
data coordination and integration strategies for measures of these indica-
tors (see Chapter 2 for definitions of indicators and measures).
To conduct this study, the IOM and the NRC formed the Committee
on Pediatric Health and Health Care Quality Measures. The committee
was charged to
1. consider all of the major national population-based child health/
health care reporting systems sponsored by the federal government
that are currently in place, including reporting requirements under
federal grant programs and national population surveys conducted
directly by the federal government;
2. identify the information regarding child health and health care
quality that each system is designed to capture and generate, the
study and reporting periods covered by each system, and the extent
to which the information so generated is made widely available
through publication;
3. identify gaps in knowledge related to children’s health status, health
disparities among subgroups of children, the effects of social condi-
tions on children’s health status and use and effectiveness of health
care, and the relationship between child health status and family
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19
INTRODUCTION
income, family stability and preservation, and children’s school
readiness and educational achievement and attainment; and
4. make recommendations regarding improving and strengthening
the timeliness, quality, public transparency, and accessibility of
information about child health and health care quality.
Study Approach
The study committee included 16 members with expertise in pediatrics
and clinical services, quality measures research, health policy, developmen-
tal and behavioral sciences, prenatal care and neonatal and infant health,
adolescent health, nursing, public health statistics and systems-level metrics,
health disparities, population health metrics, health finance, health infor-
mation technology, decision making, and research on measurement. (See
Appendix E for biographical sketches of the committee members.)
A variety of sources informed the committee’s work. In conjunction
with one of the committee’s four formal meetings, a day-long public work-
shop was held on March 23, 2010 (see Appendix B for the workshop
agenda), to obtain vital input from a broad range of relevant stakeholders,
including parents; health care providers; public and private insurers; local,
state, and federal agencies; and research experts. These stakeholders shared
with the committee the experiences of federal, state, and local policy and
decision makers and child health programs and advocates in using exist-
ing sources and methods for describing and measuring the health status of
children and adolescents, determining access to and quality of health care
for these populations, and performing outcome and impact assessments
associated with these services. The committee also conducted an expansive
review of the literature to identify key advances in the development of child
and adolescent health and health care quality measures, examine the ca-
pacity of existing federal data sets to support these measures, and consider
related research activities focused on the development of new measures to
address current gaps.
Committee members brought to these deliberations their own perspec-
tives on the nature of the problems in this area, as well as views on how the
data collection and analysis systems relevant to child and adolescent health
and health care can be made more timely, relevant, and useful. Workgroups
of committee members pertinent to each of the chapters of this report were
convened and met periodically throughout the course of the study.
In its deliberations and in the formulation of its findings, conclusions,
and recommendations, the committee sought to balance ideas reflecting
its hopes and aspirations for national data systems addressing child and
adolescent health and health care with its understanding of the administra-
tive, jurisdictional, financial, and even political exigencies that could delay
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20 CHILD AND ADOLESCENT HEALTH
or hinder the accomplishment of the goals and directions outlined in this
report. The work described herein as essential to the nation’s eventual abil-
ity to describe more fully health status and the health care experience and
its impacts for children and adolescents is presented as a “journey,” but
one whose final destination may lay several iterations ahead. There will be
many interim steps to achieve and many likely course corrections as well,
but the journey itself will require a heightened level of consensus on why it
is important to make this journey, what direction it should take, and what
benefits it will have for each of the major stakeholders who will help make
it possible. It is the committee’s hope that this report addresses these issues
in sufficient detail to make the enterprise important and worthwhile and to
contribute to its ultimate success.
Study Scope
The committee was charged broadly with providing guidance on the
state of efforts to measure child and adolescent health and the quality of
their health care services. In approaching this task, the committee sought
to gain an understanding of the full spectrum of influences, challenges, and
opportunities facing current measurement efforts. The chapters that follow
describe why such efforts are necessary and provide an overview of the key
issues that must be addressed in the course of these efforts.
ORGANIZATION OF THE REPORT
This report reviews the array of current efforts to measure child and
adolescent health, as well as the state of quality measurement of child
and adolescent health and health care services. It presents the committee’s
findings; describes a new framework for assessing the health and health
care quality of children and adolescents; and offers recommendations to
state and federal agencies for enhancing the timeliness, quality, and public
transparency and accessibility of information about child and adolescent
health and health care services, with the ultimate goal of improving health
outcomes.
The report has six chapters. Chapter 2 sets the stage for the remainder
of the report by providing definitions of key terms, essential contextual
information, the committee’s argument for the need for a comprehensive
approach to child and adolescent health, and initial observations.
Chapter 3 focuses on current data collection methods and sources used
for measuring child and adolescent health and health care quality. It reviews
the current inventory of federally supported population health data systems
and provides illustrative examples of the challenges to data collection.
Chapter 4 reviews existing child and adolescent health indicators and
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INTRODUCTION
key data sources for monitoring the health status and health outcomes
of children and adolescents. This review is organized according to seven
priority areas for measurement identified by the committee. The chapter
describes the strengths and limitations of measurement within each prior-
ity area; the timeliness, quality, and public transparency and accessibility
of the available data; and the extent to which national and state-based
data sources are available within each priority area. It proposes using an
integrated framework of health indicators to guide future quality measure-
ment efforts and highlights opportunities to develop health measures that
are responsive to local needs and health conditions while providing national
and state profiles of the health status and health care quality of children
and adolescents.
Chapter 5 focuses on measures of quality in child and adolescent health
care. The chapter reviews prior measurement efforts, both public and
private, in this area, as well as the current status of such efforts, highlight-
ing strengths and limitations, including significant gaps. The chapter also
addresses why quality measurement is important to a variety of audiences
and actors—including health care providers, families, health plans, and
policy makers—and how quality measures can be used to improve child
and adolescent health care and, ultimately, health outcomes. Finally, the
chapter highlights opportunities rooted in the emphasis on quality and ac-
countability in recent legislation and resulting from emerging technologies.
Finally, Chapter 6 provides the committee’s conclusions and recom-
mendations for advancing the measurement of child and adolescent health
and health care quality by addressing the gaps and inconsistencies detailed
in the preceding chapters. It presents a stepwise approach to the develop-
ment, collection, maintenance, and use of appropriate quality measures;
the committee’s recommendations for specific actions, including additional
strategies that will be necessary to identify priorities, invest resources, in-
tegrate diverse activities over time, and evaluate progress; and immediate
next steps that are feasible within the context of CHIPRA and health care
reform initiatives.
The report includes several appendixes. Appendix A is a list of the ac-
ronyms used in the report. Appendix B contains the agenda for the March
2010 workshop. Appendix C reviews private-sector initiatives to advance
health care quality and the development of quality measures. Appendix D
provides an overview of data sources for measures of health care quality
for children and adolescents. Appendix E provides biographical sketches
of the committee members. Finally, Appendix F presents a detailed listing
and description of existing population-based data sets for measuring child
and adolescent health and salient influences, while Appendix G provides a
detailed listing and description of sources of administrative data relevant to
the quality of child and adolescent health and health care.
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