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2 Setting the Stage This chapter begins by providing definitions of key terms and essen- tial contextual information. It then presents the committee’s argument for the need for a comprehensive approach to child and adolescent health if measures of child and adolescent health and health care quality are to be improved. The final section offers initial observations that serve as the foundation for the rest of the report. The chapter provides the concep- tual basis for addressing the strengths and limitations of current data sets that are used to measure health and health care quality for children and adolescents. It also summarizes the committee’s perspectives regarding the ways in which these measures are derived from the structures, processes, and outcomes of health care services, as well as the social and behavioral determinants of health. DEFINITIONS Definitions for several key terms are foundational for this report. These terms include child and adolescent health, functioning, and well-being, de- fined below. They also include a number of terms related to data collection, defined in Box 2-1. Children and Adolescents In this report the terms children and adolescents are used to differenti- ate critical stages of development rather than precise age ranges. The terms include related terms such as childhood, teenagers, and youth. Adolescents 23

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24 CHILD AND ADOLESCENT HEALTH BOX 2-1 Terms Related to Data Collection In addition to understanding what is measured, it is important to understand how data on these measures are collected. The terms defined below are used throughout this report; the specific methods of data collection are examined in greater detail in the following chapter. Measures are specific data collection items within a survey/interview or administrative record system, including scales, numerators, and denominators, that serve to score survey results, medical records data, administrative data, and similar data sources. They involve such questions as: “Would you rate your child’s overall health as excellent, very good, good, fair, or poor?,” “What is the birth weight of U.S. infants?,” “What is the average age, weight, or height of chil- dren served?,” “Have you [an adolescent] ever used marijuana?,” “Do you smoke cigarettes?,” “Have you ever engaged in sexual intercourse?,” and “How often do you take aspirin or medications like Tylenol for headache or other physical pain?” Indicators are a collection of individual quality measures, consisting of a denominator and a numerator, that suggest a trend or pattern of health conditions, behaviors, or influences. Indicators of mental health status, for example, may consist of several individual measures of selected disorders, such as depression, attention-deficit disorder, and mental retardation. Indexes are composites of indicators that are weighted to reflect assump- tions about the relative value of selected indicators. One such example is body mass index (BMI), an index calculated on the basis of an individual’s weight and height (and for children, gender and age) and used in the clinical assessment of obesity and overweight. Another example is the Consumer Price Index (CPI), which represents the total cost of a market basket of goods and services pur- chased by households at a point in time. Inflation is defined as a change in the CPI and is used by government, business, labor, and private citizens for many purposes. Some scholars have attempted to develop a Child Well-being Index (CWI) as a similar standard for assessing the general status (including health) of children over selected years. The CWI concept is based on a composite of indicators of well-being, including “economic well-being, safe/risky behavior, social relationships, emotional/spiritual well-being, community engagement, educational attainment . . . and health” (Land and FCD, 2010, p. 3). Data systems are the collection of measures (e.g., surveys, indicators, and other reporting tools) that are used to examine the quality of child and adolescent health and health services. A data system may consist of several federally spon- sored surveys, such as the National Immunization Survey (NCHS, 2011c), the National Health Interview Survey (NCHS, 2011b), and the Survey of Children with Special Health Care Needs (NCHS, 2009b). Data systems may require the linkage of several indicators or data sets to examine specific questions about the impact of children’s health care quality on selected areas of functioning, such as: “What do we know about the impact of the quality of asthma care on the educational outcomes of school-aged children with asthma?”

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25 SETTING THE STAGE are specified in the report because the scope of the task includes health conditions and behaviors that are unique to this age group. The age break in defining adolescent up to age 18 in this report is influenced by the age breaks currently associated with Medicaid data systems. Yet such defini- tions are frequently arbitrary. An earlier National Research Council (NRC) and Institute of Medicine (IOM) report Adolescent Health Services: Missing Opportunities (IOM and NRC, 2009a) described adolescence as a time of major transitions in which youth develop relational and behavioral skills and patterns that continue into adulthood and that critically impact future life experiences and outcomes. In earlier decades, adolescence was thought to begin with biological processes, namely the onset of puberty (generally around ages 12 or 13) and to end with the assumption of the social roles of an adult, such as the completion of education, the beginning of full-time employment, and the formation of relationships such as marriage and par- enthood. In practice, multiple age breaks are used to define adolescence, such as the variations associated with the legal age of driving, underage drinking, military recruitment, voting, and so forth. Most of these eligibility criteria are determined by local customs or federal and state regulations that are not informed by the science of adolescent development. The 2009 NRC and IOM report observed that adolescence is a theo- retical construct that continues to evolve in response to historical events, cultural context, and biological changes. Disagreement persists among health care researchers, experts in adolescent health and development, prac- titioners, and policy makers on the specific age ranges associated with the terms children and adolescents. The lower range of adolescence has shifted in response to the earlier onset of puberty among boys and girls, calling into question the term that should be used to describe pre-teen children who ex- hibit signs of adolescent development. The widening delay in time between physical maturity and securing professional employment and independent living has also caused some researchers to designate the late teenage years and early 20s as a period of “emerging adulthood” (Arnett, 2000, 2004). Before reviewing the current inventory of federally supported popula- tion health data systems in the chapters that follow, it is critical to under- stand what is meant by child and adolescent health. The World Health Organization (WHO) defines health as “not only the absence of infirmity and disease but also a state of physical, mental, and social well-being” (WHO, 1948). However, health involves more than physical wellness—it is affected by mental and emotional states as well. Moreover, those who are concerned with children’s health status want to know about more than the presence or absence of specific health problems in the general child popula- tion at a given point in time. They also want to know whether children’s health improved or diminished as compared with other periods. They often want to know as well how children with certain types of characteristics are

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26 CHILD AND ADOLESCENT HEALTH faring. And increasingly, they want to know whether children are on track to grow into healthy adults. These multiple interests require an examination of the relationship between certain health conditions or behaviors and other child characteristics (such as age, race or ethnicity, gender, geography, and household income). A growing literature documents the complex interaction among the ge- netics, environment, and developmental stages of children and the powerful impact of these factors on children’s overall health. Transition points are also being recognized as key in children’s health and well-being trajectory, including, for example, the transitions between childhood and adolescence and between adolescence and young adulthood (Ben-Shlomo and Kuh, 2002). Two other major factors are being recognized as influential—social determinants of health and life-course impacts. An earlier IOM and NRC report, Children’s Health, the Nation’s Wealth (IOM and NRC, 2004), endorses an expanded definition of child health: Children’s health should be defined as the extent to which individual chil- dren or groups of children are able or enabled to (a) develop and realize their potential, (b) satisfy their needs, and (c) develop the capacities that allow them to interact successfully with their biological, physical, and social environments. . . . (p. 4) The report refers to three domains that are associated with the mea- surement of children’s health: health conditions, functioning, and health potential (pp. 34–37): • ealth conditions denote disorders or illnesses of body systems. H • unctioning focuses on the manifestations of individual health in F daily life. • ealth potential captures the development of health assets that in- H dicate positive aspects—competence, capacity, and developmental potential. In addition to these domains, that earlier report examines the relation- ships among a variety of physical, social, and policy influences and health status and outcomes. The IOM committee that developed the report for- mulated a conceptual model emphasizing the dynamic and developmental nature of children’s health, focusing on the role of biology, the physical environment, and social and behavioral determinants in shaping the health and behaviors of children and youth (see Figure 2-1). While policy and health care services were also seen as key influences, they did not have a central role in that earlier study. The model of health used for Healthy People 2010 offers another approach to describing the interactions among

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27 SETTING THE STAGE FIGURE 2-1 A model of children’s health and its influences. SOURCE: IOM and NRC, 2004, p. 42. environmental factors and the biology and behavior of children and youth (HHS, 2000a). While this committee endorses an expanded definition of child health, multiple definitions are in use. A number of challenges to current measure- ment efforts are a consequence of this lack of consensus on the definition of child health. Different definitions of child health reflect different goals and yield dis- tinct statistics. One systematic review found that the prevalence of chronic conditions among children in the United States ranges from less than 1 percent to as high as 44 percent across different studies, depending on the

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28 CHILD AND ADOLESCENT HEALTH definition, sample, and methods used (Van der Lee et al., 2007). Assess- ment of the scope of selected health conditions through general population surveys is challenging, but it is equally difficult to estimate the prevalence of health disorders based on data from clinical service-based population surveys, such as hospital discharge or medical expense data studies. In recent years, child and adolescent health indicators have expanded to include measures of overall levels of functioning and well-being—“a state broader than health that incorporates social, psychological, educational, behavioral, and economic dimensions” (IOM and NRC, 2004, p. 20)— especially in comparing the status of children and youth in the United States and in other developed nations. This approach led to a broadening of the concept of child health to include “the ability to realize aspirations, satisfy needs, and change or cope with the environment” (Starfield, 2004, p. 166). One result of this broader perspective is greater recognition of the differ- ent developmental stages of children and ways to enhance their successful transitions and navigation between childhood and adulthood, as well as greater appreciation of the importance of childhood antecedents of adult disease (such as the major role childhood obesity can play in cardiovascu- lar disease and cancer, as well as in adult mortality). In addition, a focus on functioning and well-being encompasses interventions to minimize the impact of the experience of illness. This distinction between the presence of a health problem and factors that lead to dysfunction resulting from that problem is articulated in the IOM report Disability in America: Toward a National Agenda for Preven- tion (1991). More recently, WHO extended this concept to say that every human being can experience a decrement in health and thereby experience some degree of disability. Disability is not something that only happens to a minority of humanity (WHO, 2010). According to WHO, this disability can reflect both biological and environmental factors. This formulation also emphasizes the dynamism of health as individuals experience and recuper- ate from health conditions (WHO, 2008). The fundamental shift in the types of morbidities facing children, from infectious to chronic conditions, as well as the impact of injuries on health, further requires a broadening of the definition of where health interventions need to focus, with increasing attention being paid to communities (e.g., neighborhood and housing char- acteristics), families (e.g., family structure and social support), and schools (e.g., school nutrition and physical education/activities). Considering child and adolescent morbidities within a community context, for example, al- lows for a more comprehensive examination of the clustering and interac- tion of risk factors (e.g., substandard housing conditions, poor air and water quality, poor social environment) and/or protective resources (e.g., access to affordable, healthy foods; affordable housing and transportation;

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29 SETTING THE STAGE and essential services such as medical care and education) (Fielding et al., 2010; NRC, 2000). The growing focus on children’s levels of functioning or well-being has drawn attention to the complexity of assessing the nature and direction of interactions among children’s health status, their access to and use of health services, and the impact of their physical and social environments on their health. In recent years, the quality of health care services provided to children in different settings, by different providers, and under different conditions also has been the subject of study. For example, growing interest has focused on the use of a medical home, which the American Academy of Pediatrics defines as primary care that is “accessible, continuous, comprehensive, family centered, coordi- nated, compassionate, and culturally effective” (AAP, 2002, p. 184). The medical home concept may be especially useful for children with complex health care needs that require care coordination. Its utility as a measure of quality may be limited, however, in such areas as primary care and preven- tive services, where the identification of evidence-based and effective prac- tices is still evolving, or in areas where the social or behavioral determinants of health may have greater impact than the use of health care services on health outcomes (such as in the areas of intentional or unintentional injury). The extent to which the medical home concept, by itself, can serve as a measure of the quality of the health care system also is questionable in the absence of more information about the extent to which other care arrange- ments, or other population health interventions, can effectively improve the health outcomes of children and adolescents. The overall result of these shifts in focus is increased interest in identify- ing quality indicators of child and adolescent health and health care that are associated not only with traditional measures of child and adolescent health outcomes but also with broader indicators of well-being, such as school performance, risk behaviors, and childhood antecedents of adult disease. Greater attention also is being paid to the far-reaching costs and implica- tions of childhood disease with respect to the productivity of caregivers, as well as the future productivity of children in whom the precursors of adult disease, such as obesity and smoking, are not addressed. For example, nearly a quarter of parents (23.8 percent) of children with special health care needs reported having to stop work or cut back hours at work because of their children’s needs (HHS, 2008). These changes in employment had direct and significant consequences for family income, especially among lower-income families (HHS, 2008). In focusing on data systems, the committee endeavored to examine the contributions of existing child health data collection efforts and to as- sess their relative strengths and limitations (see Chapter 4). The findings resulting from these efforts serve as the basis for changes recommended by

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30 CHILD AND ADOLESCENT HEALTH the committee to improve the measurement of the health of children and adolescents and the quality of their health care services, especially in those areas of greatest concern to federal agencies and legislative policy makers. These findings also informed the committee’s assessment of the potential for aggregating, synthesizing, and linking measures of specific health char- acteristics to reflect the general health status of children and adolescents (see Chapter 4). BACKGROUND As context for the remainder of the report, this section provides a cur- rent snapshot of children and youth in the United States, their health status and trends, and their access to and use of health services. It also presents the committee’s argument for a comprehensive approach to child and adoles- cent health, the importance of measuring health and quality of health care for children and adolescents, and the need for a high-quality data system to collect these measures. Finally, it outlines challenges to creating such a data system. Current Snapshot of Children and Youth in the United States Children represent a substantial and growing segment of the U.S. popu- lation. In 2009, there were more than 74.2 million children and youth under age 18 in the United States, 1.9 million more than in 2000 (DeNavas- Walt et al., 2010). This number is projected to increase to 82 million in the next decade (FIFCFS, 2009). Although children make up 25 percent of the total U.S. population, they represent 35 percent of those living in poverty (DeNavas-Walt et al., 2010). Compared with U.S. adults, U.S. children also are disproportion- ately of nonwhite race/ethnicity. According to the 2009 American Com- munity Survey (ACS): • I n 2009, 55 percent of U.S. children were white, non-Latino; 22 percent were Latino; 15 percent were African American; 4 percent were Asian/Pacific Islander; 1 percent were American Indian/Alaska Native; 5 percent were multiracial; and 7 percent were identified as other race/ethnicity. • T he percentage of Latino children in the U.S. population continues to grow, and it is projected that one in every four children in the United States will be of Latino race/ethnicity by 2021 (FIFCFS, 2009).

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31 SETTING THE STAGE Recent studies have focused on measuring disparities in terms of racial or ethnic differences, but disparities can also be measured along other di- mensions, such as gender, household income, educational status of the child or parent, insurance type, and medical practice setting (Alessandrini et al., 2001; Merrick et al., 2001; Van Berkestijn et al., 1999; Wood et al., 1992). Some studies probe the importance of knowing more about the primary language spoken by parents and their children, since having English as a primary language frequently influences the success of efforts to navigate access to and use of health care services (Flores et al., 2000). For example, inequities and poor outcomes may be unobserved or understated with health care quality measures that are reported for those of Latino ethnicity without further subdivision by the child’s or family’s primary language. Research has demonstrated that children in lower-income families have more severe health problems and worse health prognoses than children in higher-income families (IOM and NRC, 2004, p. 112). Yet few op- portunities exist to collect data that provide a systematic understanding of differences in the health of children and adolescents based on their socioeconomic status. Several large population health surveys (such as the National Survey of Children’s Health [NSCH] and the National Survey of Children with Special Health Care Needs [NS-CSHCN]) provide opportu- nities to collect this type of information, but their results cannot be inte- grated with the administrative data on health care services and expenditures that are routinely collected for Medicaid and Children’s Health Insurance Program (CHIP) populations. Adding more data elements on race/ethnicity, socioeconomic status, special health care needs, primary language spoken at home, and parental English proficiency to administrative data sets for Medicaid and CHIP populations would provide a basis for comparing their health status and the quality of health care services they receive with the health and health care of other populations of children and adolescents. Poor and minority children have disproportionately high special health care needs compared with their nonpoor and white counterparts, and they are more frequently insured through public health programs such as Medicaid and CHIP (Horn and Beal, 2004) (see Box 2-2 for a description of these programs). Recent estimates suggest that more than 40 percent of African American and one-third of Latino children are estimated to have public insurance (Horn and Beal, 2004). According to the census report on income, poverty, and health insurance coverage in the United States for 2009 (DeNavas-Walt et al., 2010): • 2 0.7 percent of all children, or 15.5 million, lived in poverty in 2009 (p. 16);

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32 CHILD AND ADOLESCENT HEALTH BOX 2-2 Brief Description of the Medicaid and CHIP Programs In the past 50 years, the U.S. Congress established two major health plans that extend health services to large groups of disadvantaged children and youth: Medicaid, established in 1965, and the Children’s Health Insurance Program (CHIP) (formerly known as the State Children’s Health Insurance Program, or SCHIP), established in 1997. Both programs were enacted by the Social Security Act (Titles XIX and XXI), which also established the Maternal and Child Health Bureau (MCHB) (Title V). Each of these programs involves substantial public investments by both federal and state governments, in contrast to Medicare and MCHB, which are administered and funded solely by a federal agency. Medicaid Medicaid is a joint federal−state program that provides access to affordable and comprehensive health care for targeted low-income people—primarily chil- dren, pregnant women, parents, the disabled, and the elderly (Villegas, 2011). Roughly 60 million people receive Medicaid benefits at “some point” during a given year, about half of whom—29 million—are children (Urban Institute and Kaiser Commission, 2010). Medicaid is administered by the states, although the federal government sets minimum eligibility standards and provides at least half of the funding (Villegas, 2011). Medicaid accounts for roughly one-sixth of the nation’s total health care spending (Urban Institute and Kaiser Commission, 2010). Children represent nearly half of all Medicaid enrollees but account for only 17 percent of total Medicaid expenditures. On the other hand, seniors and people with disabilities represent one-quarter of Medicaid enrollees but account for 70 percent of total Medicaid spending (in part because of the more intensive use of acute and long-term care services by these groups). CHIP SCHIP (now CHIP) was established in 1997 to provide a capped amount of federal matching funds to states for coverage of children whose family incomes were too high to qualify for Medicaid but for whom private health insurance was either unavailable or unaffordable. CHIP covers roughly 7 million children in a given year (KFF, 2008). The Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA) was signed into law in February 2009 (see Box 2-3). CHIPRA extends and expands the original SCHIP program, adding $33 billion in federal funds for children’s coverage over the next 4.5 years. The Congressional Budget Office (CBO) estimates that CHIPRA will provide coverage to an additional 6.5 million children under CHIP and Medicaid in 2013 (CBO, 2003). In addition to providing significantly higher federal funding for children’s health coverage, CHIPRA restructured the formula that determines how much CHIP funding states receive each year; the new formula bases allotments on ac- tual expenditures and includes an “inflation factor,” which is designed to take into account both the growth in per capita health care expenditures and the growth in the number of children in each state. The enactment of national health care reform in March 2010 extended CHIP funding through 2015 and continues the program through 2019.

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33 SETTING THE STAGE • 9 .3 percent of all children, or 6.9 million, lived in extreme poverty in 2009 (defined as income below 50 percent of the federal poverty level) (p. 19); and • f rom 2000 to 2009, the poverty rate for children younger than 18 increased from 16.2 to 20.7 percent (p. 17). Moreover, children in low-income families (typically operationalized as families with incomes less than 200 percent of the federal poverty level) share many of the adverse health characteristics and access problems of children in impoverished families. According to the Census Bureau’s Cur- rent Population Survey from 1980–2008, 40 percent of children ages 0–17 lived in low-income families and 44 percent of children less than 6 years lived in low-income families (FIFCFS, 2010). Equity is a feature of the initial health care quality framework set forth in Crossing the Quality Chasm (IOM, 2001a) and is also stressed in recent legislative guidance, as well as the CHIPRA domains for measure- ment. Previous IOM reports have identified the equitable distribution of health care services as an overarching concern in assessing health care in the United States (IOM, 2006b, 2006c, 2006d). One recent review found that all of the available data sets surveyed included items that could serve as the basis for analysis of patients at risk for poor outcomes in various categories of disparity (Beal et al., 2004). However, the authors noted that studies of equity in children’s health care have relied on only a third of these data sets (Beal et al., 2004). And even these data sets have limitations that could affect their validity and reliability: only four of the survey instruments are available in languages other than English, and only one has undergone cross-cultural validation. Child and Adolescent Health Status and Trends Most children and adolescents in the United States are healthy (OECD, 2010b). Advances in medicine and more robust prevention efforts in the last half century have led to declines in infant and child mortality and improve- ments in overall child health. Dramatic improvements have occurred in sur- vival rates for childhood conditions that previously had high fatality rates. Even in the short interval between 1985 and 1999, for example, mortality from cystic fibrosis fell by 61 percent for children aged 2–5, 70 percent for those aged 6−10, and 45 percent for those aged 11−15 (Kulich et al., 2003). Childhood cancer mortality has also seen substantial improvements. For the years 1975−1995, the reduction in mortality was greater than 50 percent for childhood leukemia (Linet et al., 1999). Overall, children experience lower rates of mortality, chronic illness, and disability compared with adults (Starfield, 2004).

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56 CHILD AND ADOLESCENT HEALTH (AHRQ) (CQAIMH, 2010). Because of the limitations posed by the avail- ability of evidence, HHS’s initial core set of children’s health care quality measures includes only two measures directly related to mental/behavioral health (i.e., follow-up after hospitalization for mental illness and follow-up care for children prescribed attention-deficit/hyperactivity disorder [ADHD] medication) (CMS, 2010). Quality indicators focused on educating parents and caregivers of very young children about safety and child development are also in short supply (Kavanagh et al., 2009). Providing this type of education may prevent inap- propriate care and accidental injury, as well as allow early identification of potential learning or behavioral problems (Gardner, 2007). Lack of Parental and Adolescent Perspectives in Identifying Priority Measures The preferences of parents and especially adolescents are not reflected in the existing array of measures of health and health care quality for chil- dren and adolescents. Adolescents’ reports of their own health status, as well as their experiences with health care providers and settings, have been shown to be valid and reliable in reflecting the care they have received (IOM and NRC, 2009a). Parents also have been shown to be reliable informants in describing the extent to which their child’s needs were met—especially when seeking treatment for severe or chronic health problems (IOM and NRC, 2009a). Lack of Integration/Coordination of Data Gathering Efforts Although numerous agencies, states, insurers, organizations, and deliv- ery systems are engaged in measuring the quality of health and health care services, they lack a common approach to measurement. Analyses of data also are limited by a lack of comparable data across states or benchmarks from national sources that might be used for performance improvement. Additionally, most systems and agencies lack the ability to access important data from multiple sources. And while integrating multiple administrative data sources is elemental to understanding the complex needs of children and families with multiple issues and those involved with more than one system of care simultaneously, few agencies or jurisdictions are able to ac- complish such integration. Limited Capacity to Monitor Significant Trends Over Time Most data collection efforts lack the capacity to integrate sets of data or are limited by factors such as the ability to conduct medical record abstrac-

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57 SETTING THE STAGE tion on a large scale. Hence, most current measures gauge only whether care is provided/offered and yield little information about the receipt of care, adherence to regimens prescribed or recommended, or the long-term impact of care. Gaps in Monitoring of Disparities Several different types of disparities deserve consideration in monitor- ing health and health care equity issues among children and adolescents. These include differences in socioeconomic factors, such as household income, accumulated wealth, education, and occupation; racial and ethnic disparities; and disparities in English proficiency. Each area requires consis- tent and precise definitions to make it possible to track trends within and between selected populations, as well as to follow trends across different time periods. Interactions may occur among each of these areas, and all may be affected as well by the powerful role—as mediators and/or modera- tors—of social conditions within a specific community (Braveman, 2006). Considerable evidence indicates that these conditions and social factors op- erate through diverse, often complex pathways, including biological mecha- nisms, pathways involving access to health-promoting or health-damaging resources, and pathways involving psychosocial phenomena. Scores of studies published in the medical literature over the past sev- eral decades document that numerous racial/ethnic disparities in children’s health and health care persist, even after adjusting for all relevant covariates, including socioeconomic status. The 2003 IOM report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (IOM, 2003a), for example, states that “racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities, even when access-related factors, such as patients’ insurance status and income, are controlled” (p. 1). Like- wise, the American Academy of Pediatrics Committee on Pediatric Research published a technical report in 2010 stating that “racial/ethnic disparities in children’s health and health care are extensive, pervasive, and persistent, and occur across the spectrum of health and health care” (Flores, 2010, p. e1015). The report identifies numerous studies documenting stark racial/ ethnic disparities for these populations, after adjusting for socioeconomic status and other relevant covariates. A substantial body of research also documents a range of deleterious effects that language barriers can have on the health and health care qual- ity of children and adolescents, including inferior medical and oral health status; greater odds of having no medical or dental insurance; a lower likelihood of having a usual source of medical care; and impaired patient understanding of diagnoses, medications, and follow-up (Baker et al., 1996; Burbano O’Leary et al., 2003; Crane, 1997; Flores and Tomany-Korman,

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58 CHILD AND ADOLESCENT HEALTH 2008; Hu and Covell, 1986; Kirkman-Liff and Mondragon, 1991). For ex- ample, language barriers are associated as well with medical errors, injuries, and other patient safety events, including increased risk of serious medical events and physical harm (Cohen et al., 2005; Divi et al., 2007). Avail- able evidence indicates that optimal communication, the highest patient satisfaction, the best outcomes, and the fewest errors of potential clinical consequence occur when patients and families with limited English profi- ciency have access to trained professional interpreters or bilingual health care providers (Flores, 2005). An emerging literature points to the value of considering additional variables when assessing disparities in health care quality, access, and out- comes among children and adolescents. These include socioeconomic sta- tus, school density and status, parental education, literacy, family structure, and environmental quality at the neighborhood level with respect to safety and other social determinants that impact the health of children and adoles- cents. As CDC notes in a 2011 report on health disparities, “although the combined effects of changes in the age structure, racial/ethnic diversity, and income inequality on health disparities are difficult to assess, the nation is likely to continue experiencing substantial racial/ethnic and socioeconomic health disparities” (CDC, 2011, p. 3). A greater emphasis on improving precise measures of a broader range of variables may enable clearer causal inferences and intervention points than are possible with current measures of health disparities alone. Several studies document the adverse effects that racial discrimina- tion can have on the health and health care of racial/ethnic minorities (Williams and Sternthal, 2010). A recent review of the literature reveals that racism can result in racial/ethnic disparities in child health (Pachter and García Coll, 2009). Disparities exist in other areas that have received less attention—from special health care needs to sexual orientation—and share analogous issues of underreporting and insufficient and inconsistent data collection. For example, states collect data on health and health care disparities in a variety of nonstandard ways, which can make it challenging to identify, monitor, and address disparities at the national level. Challenges in Translating Data into Practice and Action The limited data that are available today are not well translated into practice and action. This translation requires unique skills and capacity, as well as quality improvement strategies. As the available data reflect a wide set of indicators, communities and providers often must prioritize the health conditions on which to focus, determine how to use the data to improve service delivery, and build the capacity for evidence-based practice. For asthma, for example, while an individual care plan may help ensure that a

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59 SETTING THE STAGE child is receiving the most effective treatment regimen, attention must also be focused on addressing factors known to be associated with preventable asthma hospitalizations, including avoidance of known disease triggers, inferior housing conditions, poor air quality, lack of adequate parental education, inadequate access to prescription refills, and lack of follow-up with health care providers (Flores et al., 2005a). Challenges of Relying on the Appropriate Key Informant Whereas parents/primary caregivers are clearly the most knowledgeable about their children’s health status, they may encounter a variety of barriers to understanding crucial health care concepts for their children, including low health literacy due to medical jargon, language barriers, low literacy overall, and low educational attainment, as well as pressures related to social acceptability (e.g., respondents may provide answers that they feel are more “appropriate” or “acceptable”). These barriers may create issues of validity and/or reliability for many measures. (See Box 2-5 for a detailed description of low health literacy issues.) A second issue is that when adolescents seek care for sensitive services, such as mental health issues, drug or alcohol dependency, and sexually transmitted infections and contraceptives, their parents may or may not be aware of these health-seeking behaviors or their children’s health status. This lack of awareness may lead to inaccurate reporting or underreporting of risk behaviors and/or health conditions. INITIAL OBSERVATIONS ON CURRENT DATA SYSTEMS ADDRESSING CHILD AND ADOLESCENT HEALTH AND HEALTH CARE The committee recognized from the outset of this study that in efforts to address important issues related to child and adolescent health status, health care access and quality, and outcomes of care, attention must be paid to decades-old problems within the data collection and reporting systems. At present, there is no shortage of child health data, but it is exceedingly difficult to aggregate these data in a form that is optimally useful for either sound policy decisions or health care program management. To address these issues, the committee noted that several steps will need to be taken, some requiring new and increased funding and others requiring intergov- ernmental coordination that is often considered difficult to accomplish. These steps are captured in the initial observations detailed below. Initial Observation 1: A general conceptual map of the critical dimen- sions of child and adolescent health (including health status; health

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60 CHILD AND ADOLESCENT HEALTH BOX 2-5 Challenges Posed by Low Health Literacy Health literacy is integrally linked to social determinants of health and the contexts in which families live. People who lack basic functional health literacy, defined as those who possess insufficient reading and writing skills to function effectively in everyday situations, are more likely to have never attended or com- pleted high school (Nutbeam, 2000), live in poverty, have limited English-language proficiency, and be non-Caucasian (Kutner et al., 2006). Low health literacy affects a large portion of the U.S. population. According to the most recent national as- sessment of health literacy among those aged 16 and older, 30 million (14 percent of the adult U.S. population) failed to meet standards for basic health literacy (Hawkins et al., 2010). Low health literacy has important implications for parents who are charged with seeking preventive or treatment services for their children or adhering to prescribed treatments. Although one in five adults reads at the fifth-grade level, most health information is communicated in writing and at the tenth-grade level (Hawkins et al., 2010). Research has shown that low levels of functional health literacy are associated with increased hospitalizations, greater use of emergency services, lower likelihood of obtaining preventive vaccinations, diminished ability to read and comprehend prescription labels and health messages, poorer oral health status, and lower likelihood of enrolling in social welfare programs designed to improve child health and family well-being (AHRQ, 2011; Mejia et al., 2010; Miller et al., 2010; Pati et al., 2010). Consistent with these findings, the estimated excess health care cost associated with low health literacy in the United States is $50–73 billion (Weiss and Palmer, 2004). These findings suggest that even when parents have access to and receive information from pediatric providers, health care quality will likely be compromised by the parents’ inability to use the information effectively, leading to poorer outcomes, greater health disparities, and increased health care costs. The problem of low health literacy levels may be interpreted by providers as evidence that health education is an ineffective strategy for promoting health. As health information becomes more available to the public through the Internet and other media, however, parents’ capacity to access and understand the informa- tion, to decipher its meaning and accuracy, and to feel confident in their ability to use the information effectively has never been more important. Unfortunately, identifying families with low levels of health literacy is a challenge since many individuals with low literacy skills feel ashamed and do not want others to know. Moreover, extant health literacy measures are flawed; a recent review cites nu- merous weaknesses related to their psychometric quality and problems with wide variations in how relevant aspects of health literacy are defined and measured (Jordan et al., 2010). Given the challenge of identifying individuals in the health care system with limited health literacy skills and the likelihood that as more immigrant families enter the health care system, more children will be affected, it is imperative that innovative strategies for the delivery of health information be developed. These strategies may include greater use of audio and video recorded messages, pic- tures, maps, diagrams, and large print with simple words that are easy to under- stand (Hawkins et al., 2010).

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61 SETTING THE STAGE care access, utilization, and quality; and health care outcomes) will need to be developed, widely adopted, and implemented by federal, state, and local health and health care agencies, as well as private-sector organizations. There is considerable value to be derived from conceptual frameworks presented in a graphically understandable form. One such framework upon which the committee decided to build was developed by the IOM commit- tee that produced Children’s Health, the Nation’s Wealth (IOM and NRC, 2004). This diagram, reproduced earlier as Figure 2-1, offers a perspective on how children’s developmental stages over time have important (and different) health implications for four spheres of influence on child/adoles- cent health (biological factors; the child’s social environment; the physical environment in which the child lives and matures; and health-relevant be- haviors, some of which are health-promoting, while others pose threats to health status and the processes of healthy physical and emotional/mental development). This committee did not attempt to reconceptualize these important fac- ets of child health and development but used this earlier framework to be- gin addressing the questions posed by the Congress and the federal agency sponsoring this study (see Chapter 1). In embarking on its charge, however, the committee noted that, despite the focus of the earlier IOM report on child health status and the multidimensional factors that, together, influence health status, the diagram in Figure 2-1 does not illustrate the complexities associated with interactions between health care services and interventions and health outcomes. Thus it fails to address access to and availability of relevant services for children; understanding of the presumptive value of such services by parents or guardians; the actual provision of those services and their quality; and the impact of access to and use of those services on child health outcomes, such as functional health status. The committee determined that it was necessary to complement the conceptualization of children’s health and its influences with an approach that would capture additional facets of health care services, including access, use and quality of services, and impact. The committee began this discussion with the now axiomatic for- mulation of the late Avedis Donabedian of the University of Michigan (Donabedian, 1988), who identified structure, process, and outcomes as the key dimensions of health care quality. Using these Donabedian domains, the committee identified three key foci for the collection, analysis, and use of child and adolescent health and health care quality measures: (1) access to care/services; (2) levels of utilization and quality of care/services (including underlying processes); and (3) outcomes of service access, use, and quality (see Figure 2-3). This initial formulation led to an elaboration of the es-

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62 CHILD AND ADOLESCENT HEALTH Outcomes Health Care Services (Utilization and Quality) Access to Care (Availability of Services) FIGURE 2-3 The pyramid of child health care. Figure 2-3.eps sential content and meaning of each of these three interrelated dimensions redrawn (see Figure 2-4). (editable vectors) The committee quickly concluded that a comprehensive attempt to characterize the principal (and priority) components of a national data system to address the key components of child and adolescent health care— including access to and utilization of quality services and the outcomes of such access and use—would be an effort of considerable complexity, beyond the scope of this study. This effort would need to identify not only measures of evidence-based health care services but also the extent to which such services were available or provided in an effective manner to the ap- propriate populations of children and adolescents, including indicators of overuse and underuse of such services. Including these types of data system components would represent an extension of the four major categories of influence on child and adolescent health depicted in the diagram from the earlier IOM study, Children’s Health, the Nation’s Wealth (Figure 2-1),

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63 SETTING THE STAGE Protective Outcomes Rx Outcomes Disease Incidence • Growth and development and Prevalence Rates • School performance • Adult role function Sereening Outcomes Diagnostic Outcomes Percent Screened • Confirmed case rate and Positive Rates (verification of OUT- screening) COMES • Immunization rates Acute Rx: Preventative Interventional • Chemoprophylaxis • ED use • Self-care (e.g., safe sex) • System of care HEA Protective Treatment L CA TH • Smoking and alcohol use • Clinical response to Rx SER RE Acute/Chronic V • Fluoride varnishes/sealants (Utili ICES z ati and on Cronic Rx: Screening Diagnosis Qua lity) • System of care • Tuberculosis • Adherence • STDs • Disablement/limitations • Vision • ADL function • Hearing e Insurance Coverag AC CE (Av SS TO aila CA ces Availability of Servi Se bility RE • Interstate variation • Access to care rvi ces of • Access barriers • Follow-up titlement Programs ) Enrollment in En and referral “Medical Homes” FIGURE 2-4 Changing the structure and emphasis in child and adolescent health care access and quality measures. NOTE: ADL = activities of daily life; DX = diagnosis; ED = emergency department; STD = sexually transmitted disease. and introduce even greater complexity, cost, and anticipated difficulties in implementation. In its deliberations, the committee assumed that an important outcome of its efforts would be the promulgation of one or more conceptual models for a comprehensive data system for child and adolescent health and health care quality. To be successful, such conceptual models would need to be widely accepted and applicable at all levels (federal, state, and local) so as to promote efforts at each level to develop useful child and adolescent health data systems for the future. Initial Observation 2: The identification of critical dimensions of child and adolescent health and health care services will require consensus around specified goals for this population. Many of the objectives of such a system, however, are of high priority. A planning process will be necessary to prioritize needs for data on child and adolescent health status, health care needs, service availability and ac- cessibility, utilization and quality of care processes, and outcomes of care that will make it possible to address urgent public policy issues surround-

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64 CHILD AND ADOLESCENT HEALTH ing new program initiatives and entitlement expansions for children and adolescents. In this report, therefore, the committee attempts to identify concrete steps that can be taken to meet these needs. Initial Observation 3: Once consensus is reached on the best and most reliable indicators of key variables in this conceptual map, federal, state, and local health and health care agencies, as well as the private sector, will need guidance on the feasibility of incorporating these indi- cators and associated measures as requisite data items (i.e., minimum basic data items to be collected on child and adolescent health) in exist- ing health and health care data sets. An important initial step in enabling immediate progress toward a national approach to child and adolescent health and health care quality data was undertaken by an expert advisory panel convened by AHRQ. This panel, known as the Subcommittee of the National Advisory Com- mittee (SNAC), recommended an initial group of core measures for health and health care quality for children and adolescents. (A detailed review of the SNAC effort is provided in Chapter 5.) The SNAC identified 24 key indicators (referred to as “the initial core set”) of health and health care service utilization that are currently available from federal agency sources and could serve as a useful starting point for a national approach to the development of a child and adolescent health data system. Initial Observation 4: Standardized, annual (or more frequent) report- ing of these standard measures (minimum basic data items) is neces- sary. In some cases, high-quality measures are already available and being collected in some but not all jurisdictions. In other cases, less than optimal data collection strategies may exist that can be improved through additional funding and collaboration among local, state, and federal agencies. As the committee began its work, it soon realized that the task before it would involve consideration of additional (and perhaps new) statistical measures of various indicators of child and adolescent health and health care quality that would fill gaps in current federal data sources. Thus it would be important to lay the groundwork for the definition of a minimum basic data set for child and adolescent health and health care quality that would be enabled by the standardized collection, analysis, and reporting of comparable data of high statistical quality from every state. Clearly, the implementation of a new national effort to collect, analyze, and report data on child and adolescent health and health care quality that involves

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65 SETTING THE STAGE federal, state, and local collaboration would require time, expertise, and financial support. SUMMARY A commitment to improving the health and health care of children and adolescents requires careful and thoughtful measurement to gauge progress, existing gaps, and future directions. The increasingly diverse population of the United States necessitates that data be collected routinely; consistently; and with special attention to identifying, monitoring, and addressing ra- cial/ethnic, socioeconomic, linguistic, and special health care disparities. Changing definitions of health, the changing sociodemographic profile of the nation’s next generation, and significant changes in health conditions call for improved measures in the nation’s health care and population-based information systems. The improved measures will need to address the availability of and access to health care services, the utilization and quality of health and health care services and their underlying processes, and the outcomes associated with their use. Initial observations about the current state of measurement of child and adolescent health and health care quality suggest that conceptual work is necessary to organize data on child and adolescent health and health care quality; to identify priority goals in these areas; to reach consensus on valid and feasible measures for these goals; and to standardize reporting of these measures in federal, state, and local reports. These observations provided the starting point for the committee’s deliberations.

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