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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 15

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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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21 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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