The development of conceptually sound and reliable health measures for children and adolescents is of critical importance for policy makers, researchers, clinicians, and families, as well as community leaders and the general public. Child and adolescent health measures can be used to assess the effects of disease or injury on health; to identify vulnerable children in clinical practices and vulnerable population subgroups in health plans or geographic regions; to measure the effects of medical care, policy, and social programs; and to set targets for improving health care (Szilagyi and Schor, 1998). Health measures also can identify general health trends over time to highlight areas of progress as well as emerging areas of concern.

Until the middle of the 20th century, data on infant and child mortality provided a reasonable assessment of child health (Guyer et al., 2000). The neonatal segment of infant mortality (number of infant deaths at less than 28 days per 1,000 live births) provided a window on conditions related to fetal development, complications of pregnancy and delivery, and the newborn period; the postneonatal segment helped in understanding conditions influencing child health through the preschool years (Black et al., 2003; Heron et al., 2010).

The middle of the 20th century saw a decrease in the influence of infectious diseases on child health. A different pattern of morbidity emerged, termed the “new morbidity” (Haggerty et al., 1993; Palfrey, 2006). Indicators of Child and Adolescent Health Status Essay. The conditions dominating child health today often reflect behavioral and de-

developmental problems and chronic conditions, as well as associated social conditions, which are poorly captured in vital statistics systems.

This same period saw the emergence of a wealth of measurement tools in developmental psychology for assessing normal child development, including Ages and Stages Questionnaires (ASQ), Bayley Infant Neurodevelopmental Screens (BINS), Parents’ Evaluations of Developmental Status (PEDS), and the Wechsler Preschool and Primary Scale of Intelligence (WPPSI), among others. The application of these measures, however, has been limited by both conceptual and practical issues. The conceptual issue is that theories of developmental psychology are still evolving and do not agree on the selection of appropriate domains for assessment. A comparison of several well-established child health measures, for example, reveals 14 separate dimensions of child health (Landraf et al., 1996). Moreover, many of the dimensions, such as learning disabilities, require sophisticated testing by trained examiners. Practical issues include provider time, reimbursement, and differential skill requirements for administering the instruments.

Early efforts focused specifically on measures of child health status that would capture issues related to functional abilities were patterned after more well-established adult measures (Eisen, 1980; Starfield et al., 1993). For example, many adult health function measures inquire about the impact of health issues on work and can be adapted to inquire about school for older children. For preschool children and infants, however, such adaptation is limited, as the activities of younger children are focused more on attaining developmental skills necessary to attend school and participate in other activities. Further, data on the validity and reliability of even established measures are relatively sparse for pediatric outcomes. Validity is established most commonly by the ability of the instrument to yield different scores when administered to healthy children and those with established diagnoses. Most instruments have not been used in a longitudinal fashion, moreover, so that information on predictive validity is lacking, and little has been done to validate responses against clinical observations. Indicators of Child and Adolescent Health Status Essay. For example, if a mother reports that her child has difficulty in play activities, does this indicate a lack of stamina, a lack of coordination, or a lack of social skills? Alternatively, does it reflect the mother’s lack of understanding of what developmentally appropriate play looks like at that age?

Since the adoption of quality improvement initiatives under the Children’s Health Insurance Program Reauthorization Act (CHIPRA), as well as new quality efforts authorized under the Patient Protection and Affordable Care Act (ACA), the Congress and public and private health agencies have begun searching for valid, reliable, and accessible health and health care measures that can support the implementation and evaluation of these efforts. Ideally, such indicators would provide the capacity at the national, state, and local levels both to monitor the overall health of children and

adolescents and to analyze the quality of health care services offered to both the general population and vulnerable groups of children and adolescents.

An ideal set of health measures would inform comparisons of the status of children and adolescents served by different health plans (both public and private) and the types of health issues associated with different providers (pediatricians versus nurse practitioners and primary versus specialty care) and health settings (such as hospitals or ambulatory care settings). These measures would provide opportunities for states or regions of the country to monitor the conditions of children and adolescents in areas relevant to their own circumstances.

Ideally, robust health indicators would reveal significant trends and changes in health status over time for the general population of children and adolescents, as well as special groups that are at particular risk for poor health outcomes and frequently are not identifiable in the major population-based data sources. Such groups of vulnerable children include those whose health may require special attention because of particular or multiple conditions of disadvantage, such as those in certain income categories; those in certain racial or ethnic groups (such as American Indians or Alaska Natives); those who live in homes in which English is not the primary language spoken; those in residential or institutional care (such as foster care); those who are uninsured or underinsured; and those who reside in certain geographic areas, such as selected census tracts, rural environments, or regions with low numbers of health care providers (underserved communities).

Finally, in an ideal world, child and adolescent health measures would support analyses of the ways in which economic and social circumstances influence health status. Indicators of Child and Adolescent Health Status Essay. Such analyses might include the relationships among children’s insurance status, their access to health providers, and their use of and the effectiveness of health care, as well as the relationship between child health status and family income, family stability and preservation, and children’s school readiness and educational achievement and attainment. The measures would also make it possible to examine relationships between the health status of children and adolescents and their educational performance, their social behaviors, and their future health status and productivity as adults.

The remainder of this chapter examines the current status of child and adolescent health measures; measures of health care quality are discussed in Chapter 5. The first section takes a detailed look at existing measures, including their strengths and limitations. Issues of the timeliness, quality, public transparency, and accessibility of currently available data on child and adolescent health are then addressed. Next, the chapter turns to the challenges of aggregating, synthesizing, and linking multiple sources of these data. This is followed by a review of efforts to make the data

more meaningful by linking population health indicators and public health interventions.

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EXISTING MEASURES OF CHILD AND ADOLESCENT HEALTH

In preparing a review of existing measures of child and adolescent health, the committee identified seven priority areas for measurement, current related measures, and the existing sources that provide data on these measures.Indicators of Child and Adolescent Health Status Essay.  The priority areas are based on the committee’s collective judgment and emerged through careful deliberations, a thorough review of the literature, workshop presentations from a variety of engaged stakeholders and experts, and an extensive review of existing data sets. The committee considered the strengths and limitations of measures within each priority area, as well as the extent to which national and state-based data sources are available within each area. The seven priority areas are

• childhood morbidity and mortality,
• chronic disease conditions,
• preventable common health conditions (especially mental and behavioral health and oral health),
• functional status,
• end-of-life conditions,
• health disparities, and
• social determinants of health.

In addition, the committee considered the life-course approach, discussed in detail in Chapter 2, to be an overarching priority area that is integral to all seven areas listed above. The committee therefore contends that measurement should be informed by a life-course perspective and includes in this section a review of the limited number of existing measures and data collection efforts related to the life course. Indicators of Child and Adolescent Health Status Essay.

Using these priority areas as a starting point for examining the existing array of measures and data collection efforts differs from previous approaches. For example, the IOM-NRC report Children’s Health, the Nation’s Wealth (2004) focuses on the specific measures of child health included in selected national surveys (e.g., up-to-date immunizations or nutrition adequacy). Instead, the approach used in this report enables those who are interested in a particular aspect of child and adolescent health (e.g., preventable common health conditions) to readily identify the most relevant currently available data sources. The sections that follow review child and adolescent health measures and data sources according to the seven priority areas, as well as the life-course approach; a more comprehensive review of the relevant data sets is included in Appendix D. Indicators of Child and Adolescent Health Status Essay.