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Child and Adolescent Health and Health Care Quality: Measuring What Matters (2011)

Chapter: 4 Existing Measures of Child and Adolescent Health

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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

4


Existing Measures of Child and Adolescent Health

Health is not bought with a chemist’s pills,
nor saved by the surgeon’s knife.
Health is not only the absence of ills,
but the fight for the fullness of life.

P. Hein Prologue at the celebration of the 40th anniversary of the
World Health Organization (1988), Copenhagen

(Reprinted with permission by WHO)

Summary of Key Findings

  • Multiple data systems capture information on specific health conditions, but there appears to be overlap in their populations and content. Moreover, measures are inconsistent across states, and no current mandate exists for comparability and standardization.
  • Current data collection systems for monitoring health frequently fail to address important social and environmental factors that influence children’s health outcomes. Likewise, data collection systems that monitor educational performance or children’s well-being frequently omit health data.
  • Multiple recommendations for improving health measures for children and adolescents have emerged in recent years. However, current federal surveys do not yet include a robust set of measures of positive health, functioning, development, and health potential within a life-course framework.
  • Significant disparities in health status and health care quality currently exist for a variety of racial, ethnic, and sociodemographic populations of children.
Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×
  • Social and economic conditions influence child health. Such conditions include not only household income and educational level, but also such factors as racial and ethnic identity, family structure, immigrant status, urban/rural location, and health literacy.
  • Multiple environmental factors influence child health, many of which are outside the purview of the health care system.
  • Data on community factors are frequently available in nonhealth surveys (e.g., environmental surveys, educational surveys, or child victimization surveys).
  • A life-course approach provides a basis for understanding the relationships among early health conditions, health influences, and later health status.
  • Child health is strongly influenced by family and especially maternal health (e.g., maternal depression).

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). The conditions dominating child health today often reflect behavioral and de-

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

velopmental 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. 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

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

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. 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

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

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

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. 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.

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.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

Childhood Morbidity and Mortality

A considerable amount of data related to child and adolescent morbidity and mortality is routinely collected and analyzed. Surveillance of injuries and fatalities among young people, for example, provides insight into one aspect of how children are doing and underscores how their epidemiology differs from that of adults. While unintentional injuries are a leading cause of death among Americans of all ages, they are the leading cause of death among children and adolescents aged 1−19 (Bernard et al., 2007) (see Box 4-1). Young children (under age 4) are especially vulnerable to life-threatening injuries (e.g., suffocation, drowning, and injuries related to motor vehicle crashes) (CDC, 2006).

Three primary sources of data are used nationally to track morbidity and mortality: the National Vital Statistics System (NVSS), the Medical Expenditure Panel Survey (MEPS), and the Healthcare Cost and Utilization Project (HCUP).

BOX 4-1
Leading Causes of Death Among Children and Adolescents

Accidents* are by far the leading cause of death among children and adolescents. The top three causes of death by age group are listed below.

Ages 0−1:

  • Developmental and genetic conditions present at birth
  • Sudden infant death syndrome
  • All conditions associated with prematurity and low birth weight

Ages 1–4:

  • Accidents/injuries
  • Developmental and genetic conditions present at birth
  • Cancer

Ages 5−14:

  • Accidents/injuries
  • Cancer
  • Homicide

Ages 15−24:

  • Accidents/injuries
  • Homicide
  • Suicide

______________

* The preferred term for “accidents” is “unintentional injuries.”
SOURCE: NIH, 2010b.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

The NVSS is maintained by the National Center for Health Statistics (NCHS) within the Centers for Disease Control and Prevention (CDC). Federal reports frequently use data from the NVSS to monitor trends in child and adolescent mortality on a regional, national, and international basis. NVSS data are collected through ongoing reports from vital statistics officers in 50 states and the District of Columbia and reflect the cause of death that is recorded on individual death certificates, providing the basis for analyses of the leading causes of childhood morbidity and mortality. The data are organized by age and gender, as well as selected racial and ethnic groups. The NVSS relies on International Classification of Diseases (ICD) codes to describe health conditions, disorders, diseases, and injuries. For the most part, the ICD codes are organized by disease or injury categories, such as different types of cancers or congenital conditions, infectious and parasitic diseases, endocrine conditions, mental disorders, disorders of pregnancy and childbirth, poisonings, drowning, and so forth.

Hospitalization data for children and adolescents are collected through such data sources as the MEPS, as well as such syntheses of public−private data collection efforts as the HCUP. MEPS data are collected through a nationally representative survey of U.S. civilian households. The data provide information on the utilization and cost of health services, as well as on the cost, scope, and breadth of private health insurance held by and available to the U.S. population. HCUP data include a census of hospital discharge billing records collected from 40 states. The data provide information on reasons for hospitalization, length of hospital stays, procedures during hospitalization, and treatments received for specific conditions while in the hospital.

As a part of HCUP, the Agency for Healthcare Quality and Research (AHRQ) developed a database specifically designed to allow in-depth studies of children’s hospitalizations—the Kids’ Inpatient Database (KID). The KID is a stratified probability sample of pediatric discharges from 2,500–4,000 community hospitals in the United States (defined as short-term, nonfederal general and specialty hospitals, excluding hospital units of other institutions). The purpose of KID data, which are drawn from an all-payer (Medicaid, private insurance, and uninsured) inpatient care database for children, is to identify, track, and analyze national trends in utilization, access, charges, quality, and outcomes for inpatient hospital services.

Large claims-based data sets available from insurers and vendors also are commonly used in research on health care utilization and on prevalence of disease. Examples include the Medstat Marketscan data set and the data sets of Blue Cross Blue Shield, Wellpoint/HealthCore, and Kaiser Permanente.

Data collected by the HCUP and the KID reveal the most common reasons for admission to the hospital among children aged 17 and younger.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

The overwhelming majority—approximately 95 percent—of these admissions are for the birth of infants (Owens et al., 2003). Newborns, or children 30 days of age or less, account for approximately 4.8 million hospital stays or 73 percent of all childhood admissions (Elixhauser, 2008). Affective disorders, including depression and bipolar disorders, are the sixth most common reason for hospital admissions among children, accounting for 82,500 discharges. Adolescent pregnancy is one of the leading causes of hospitalization for females younger than 17. For adolescent boys, hospitalization occurs primarily as a result of unintentional injuries (Owens et al., 2003).

Strengths

NVSS data provide a rigorous classification scheme for deaths associated with an array of health conditions, including pregnancy, abortions, and various types of injuries that are common among children and adolescents. The data can be pooled and analyses conducted over multiple years by gender, race and ethnicity, and geographic location (state and county level) to highlight trends that may not be apparent within a single time period. The NVSS E-codes provide supplemental information about the cause of injury (such as motor vehicle crash or child maltreatment). The rigor of the data classification and the ongoing data collection support analyses of trends among racial and ethnic minority groups that are often difficult to detect in studies that rely on household surveys or other data sources. For example, one CDC study of fatal injuries among children by race and ethnicity (1999−2002) highlighted disproportionate rates of deaths due to motor vehicle injuries among American Indian/Alaska Native children, as well as higher rates of drowning deaths among black infants and American Indians/Alaska Natives aged 1−19 (Bernard et al., 2007). Linked death and birth records permit the examination of infant deaths by characteristics of the parents and can be used to compare the mortality experience of different subpopulations (IOM, 1993). Linked records also provide insight into access to prenatal and delivery care and some outcomes of pregnancy (Marquis and Long, 2002; Schoendorf and Branum, 2006).

Data collected through the MEPS and HCUP may be more accurate and reliable than survey data. For example, data obtained directly from providers, such as specific diagnoses and treatment, are less likely to be affected by recall bias than comparable data obtained from surveys based on self-reports (Cohen, 2004). Hospital discharge data can often be linked to other data sets, including data from the social services, criminal justice, education, housing, and other sectors (Schoenman et al., 2005).

The KID’s large sample size enables analyses of both common and rare conditions. The database comprises more than 100 clinical and nonclinical

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

variables for each hospital stay, including primary and secondary diagnoses and procedures, admission and discharge status, patient demographics (e.g., gender, age, race, median income for ZIP code), expected payment source, total charges, length of stay, and hospital characteristics (e.g., ownership, size, teaching status). The KID contains clinical and resource use data included in a typical discharge abstract, but excludes data elements that could identify individuals directly or indirectly. Analyses of HCUP and KID data on rates of hospital admissions for specific conditions per population or rates of specific events per procedure can provide the hospital and reimbursement perspective on health care quality in terms of effectiveness and patient safety (Berdahl et al., 2010). Children can be identified by age in the Household Component of the MEPS, allowing most MEPS analyses to be performed for children. In 2001, a Child Health and Preventive Care section was added to the survey. It contains questions previously included in the 2000 Parent Administered Questionnaire, selected questions related to children that had been asked in previous years, and additional questions related to child preventive care.

Limitations

Morbidity and mortality data provide information for only the most severe health consequences, which involve a relatively small number of children and adolescents. Those who are concerned with children’s health status often want to know more than just the presence or absence of specific health problems in the general child population at a given point in time. They want to know the sequence of health conditions that may contribute to morbidity and mortality events, as well as the relationship between selected health conditions and certain social characteristics. They want to know whether children who have access to certain family resources, certain types of health care providers, or certain environmental and social conditions fare better than those who do not. And increasingly, they want to know whether children are on track to become healthy adults, especially those young people who display early signs of poor health conditions that are associated with adverse health outcomes and chronic disease in older populations.

While NCHS can link vital statistics data with other data sources (including census data, Supplemental Nutrition Program for Women, Infants, and Children [WIC] program data, and hospital discharge data), NVSS data alone are limited in the information they can provide. For example, NVSS data do not capture fetal mortality experience by special populations (e.g., populations that are relatively small in number). Furthermore, challenges to data collection, including frequent item nonresponse, variation in state reporting requirements, and racial misclassification, may limit the overall

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

quality and utility of NVSS data (Hoyert and Martin, 2002). The NVSS also does not collect information about family or other household characteristics (e.g., socioeconomic status), nor does it collect data on the types of health plans associated with selected health conditions or injuries. Hospital discharge data, of course, are limited in that they capture only those events that occur in a hospital. Moreover, the HCUP does not include data from all states, and less populous states are underrepresented. Further, the HCUP is not designed specifically for pediatric issues and does not allow for longitudinal studies of individuals. It is unclear whether the KID has the capacity to capture a representative sample of uncommon and rare diagnoses.

Chronic Disease Conditions

The number of children and youth in the United States identified as having chronic health conditions has increased considerably in the past four decades. Data from the 2009 National Health Interview Survey (NHIS), for example, indicate that 14 percent (more than 10 million) of children in the United States aged 17 and under have ever been diagnosed with asthma and that 10 percent (7.1 million) of children still have asthma. The 2009 survey also found that 9 percent (5 million) of children aged 3−17 had attention-deficit/hyperactivity disorder (ADHD) (Bloom et al., 2010). More than 12 million U.S. children meet the definition of children and youth with special health care needs—those at “increased risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required of children generally” (McCormick et al., 2011; McPherson et al., 1998, p. 138). This group accounts for roughly 15−20 percent of the childhood population and for 80 percent of annual health care expenditures for all children (Newacheck et al., 1998b). Whether the increase in the number of children and adolescents with chronic health conditions is the result of environmental changes, better survival rates for once-fatal conditions, or increased access to care through Medicaid expansions and the Children’s Health Insurance Program (CHIP), it represents a significant trend (Van Cleave et al., 2010).

The NHIS is conducted annually and collects data on health indicators, health care utilization and access (including current health insurance coverage), and health-related behaviors for the U.S. civilian noninstitutionalized population. As a household survey, the NHIS collects data on all members of the household, including children, adolescents, and adults. Data collected through the NHIS are used to monitor trends in illness and disability and to track progress toward the achievement of national health objectives (Bloom et al., 2010).

The National Survey of Children’s Health (NSCH), first introduced in 2003 and subsequently fielded in 2007, is one of the most comprehensive

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

surveys of child and adolescent health that offers national as well as state-level data (NCHS, 2010b). Data collected through the NSCH support analyses of physical, emotional, and behavioral child health indicators, as well as contextual factors. The next NSCH survey, planned for 2011, will expand the measurement of insurance adequacy beyond “having coverage” to include items regarding the actual providers and services covered by the child’s insurance policy, the costs of services not covered by the deductable, and the overall adequacy of benefits (Bethell and Newacheck, 2010).

The NSCH is complemented by two other national surveys—the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Early Child Health (NSECH). The NS-CSHCN was first conducted in 2001 and again in 2005−2006 to monitor states’ provision of services to children with special health care needs through federal programs, such as Title V and Supplemental Security Income (SSI) (Blumberg et al., 2003; van Dyck et al., 2002). The NS-CSHCN measures more than 100 indicators of children’s health and well-being for children enrolled in these programs in six key areas: health status, health care, school and activities, family and neighborhood, young children (aged 0–5), and school-aged children (aged 6−17). The NS-CSHCN was developed to measure the prevalence among children of both chronic conditions (e.g., asthma; attention-deficit disorder [ADD]/ADHD; depression, anxiety, or other emotional problems; mental retardation; and seizure disorders) and functional difficulties (e.g., respiratory problems, behavioral problems, chronic pain, and self-care), as well as services received and satisfaction with care (Blumberg et al., 2003; CAHMI, 2006; van Dyck et al., 2002).

The NSECH is a nationally representative household survey of children aged 4−35 months that produces national and regional estimates. It was administered once, in 2000. Planning for a possible NSECH-II has been under way for several years, but no plan for its readministration has yet been developed. Survey questions include child developmental status, provision of recommended preventive services for which parents are valid reporters (e.g., anticipatory guidance, some screenings, and family-centered care), parenting behaviors and home safety, health insurance status, early childhood program enrollment, and utilization of services (Halfon et al., 2002).

The above three national surveys obtain national and state-based samples that are weighted to represent the general population of noninstitutionalized children and adolescents. They all rely on a household survey platform known as the State and Local Area Integrated Telephone Survey (SLAITS), which is conducted by NCHS to support the design and sampling frame for the ongoing National Immunization Survey. The SLAITS operates by calling household telephone numbers at random to identify households with one or more children under 18. In each household, one child is randomly selected to be the subject of the interview.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

Strengths

Key strengths of the NHIS include its large and carefully constructed sample size, its well-tested questionnaire items, and the fact that it is conducted annually (IOM, 1993). Another strength of the NHIS is that it can be linked to other surveys and data sources, including the MEPS and death certificates in the National Death Index (NDI). These linkages to multiple years of data produce a rich database that includes medical care utilization data.

The NSCH, NS-CSHCN, and NSECH allow analysts to collect information from parents about the health and well-being of their children, as well as the social and economic conditions of the family, such as household income and type of insurance coverage (public or private), in a fairly short time period. By relying on the common sample pool developed by the SLAITS, these surveys can be conducted by telephone in English and Spanish at relatively low cost. The NSCH national data support analyses by gender, age group, race/ethnicity, household income, and insurance status, as well as type of insurance plan (public or private). Sample sizes in these surveys are sufficient for state-based analyses.

Limitations

The NHIS was redesigned in 1997, and the current survey differs somewhat from earlier versions in content, format, and data collection method. These changes can hinder comparisons between 1997−2009 NHIS estimates and those from earlier years (Bloom et al., 2010). Like other surveys, moreover, the NHIS relies on respondents’ recall and self-reports of health status, which may be imprecise compared with health examination data or medical record abstracts (IOM, 1993).

While the NSCH sample is sufficient to represent the general U.S. population of children and adolescents, the survey does not adequately represent large numbers of disadvantaged children who may rely on Medicaid or CHIP health plans for their health services, nor does it include children or adolescents who reside in group homes or juvenile detention centers and who may be at greatest risk of poor health outcomes. For example, the sample is too small to document rates of chronic health conditions, such as sickle cell disease, that may be relatively rare in the general population but more common among certain racial and ethnic groups of children and adolescents. Moreover, the NSCH is a periodic survey, and its data are confined to the years in which the survey was conducted.1 Also, because the NSCH

____________

1 Legislation to expand state-level indicators of child well-being has been introduced in the House (H.R. 2558) and Senate (S.1151). The legislation would expand the range of data collected in the existing NSCH and provide for collection of the data on an ongoing basis or annually (U.S. Congress 111th, 2009).

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

relies on the SLAITS platform, the data it collects are limited to residential telephone numbers (e.g., land lines), and parental participants are restricted to those who speak English or Spanish. In addition, cellular telephone technology may have a significant impact on the scope and quality of the survey data, especially in households that rely solely on cell phones and may not want to participate in national surveys because of time restrictions on cell phone use (Blumberg and Luke, 2007; Blumberg et al., 2006; Brick et al., 2007). In terms of specific measures, the NSCH does not collect data on neonatal or perinatal conditions or on child mortality. Nor does it collect data on the English proficiency of parents, so the impact of limited English proficiency cannot be assessed. As noted, the NSCH also is administered in English and Spanish only, which limits the conclusions that can be drawn regarding the primary language spoken at home. Finally, several limitations result from the fact that the survey is conducted with a parent or caregiver, which may contribute to under-, over-, or inaccurate reporting:

  • Parental reports of child or adolescent health conditions, insurance status, or household income are not verified by a review of individual health or financial records.
  • Parents may not be familiar with the type of insurance coverage in their health plan (e.g., managed care versus preferred provider networks).
  • The survey relies on parental reports of diagnoses of their child’s health conditions. Parents may not know the specifics of the health conditions affecting their child, may not be familiar with the types of screening instruments or early intervention services offered to their child, and may not recall specific aspects of their child’s treatment and/or care.
  • The parents of an adolescent may not be aware that their child has accessed confidential mental health, drug treatment, and/or reproductive health services.

Preventable Common Health Conditions
(Especially Mental and Behavioral Health and Oral Health)

Apart from mortality and hospitalization data, as well as data on children with special needs and/or chronic health conditions, a number of population-based child health indicators are used as the basis for the early detection of health conditions that are likely to contribute to chronic conditions during either childhood or adulthood. Since 1980, CDC has established national health objectives for improving the health of all Americans (PHS, 1980). These objectives focus on a range of largely preventable health conditions that contribute to the leading causes of mortality and morbidity and are frequently associated with unnecessary hospitalizations among chil-

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

dren, adolescents, and adults. Many of these health conditions are targets for specific health care interventions to prevent or delay the onset or reduce the severity of avoidable health problems.

A variety of national data sources suggest childhood trends that are particularly disturbing in some areas. For example:

  • As discussed in Chapter 2, the growing epidemic of childhood obesity has emerged as a major public health problem throughout the nation (IOM, 2005).
  • Another disturbing trend noted in Chapter 2 is the near doubling of the proportion of children and adolescents with asthma since the 1980s (Akinbami, 2006).
  • While the oral health status of most Americans has improved over the last two decades, the prevalence of dental caries (or tooth decay) in primary teeth increased significantly among children aged 2–5 (from approximately 24 to 28 percent), and dental caries has remained the most prevalent chronic disease of childhood (Dye et al., 2007).
  • A recent study providing “the first prevalence data on a broad range of mental disorders in a nationally representative sample of U.S. adolescents” estimated that one in five children and adolescents in the United States meets criteria for a mental disorder (see also Chapter 2). Among those surveyed, 31.9 percent met the criteria for anxiety disorders, 19.1 percent those for behavioral disorders, and 14.3 percent those for mood disorders (Merikangas et al., 2010a).

NCHS collects data from vital and medical records and interview surveys and through physical examinations and laboratory testing. These data provide important surveillance information that helps identify and address critical health problems. Major survey-based data collection efforts include the National Health and Nutrition Examination Survey (NHANES), the NHIS, the SLAITS, and the NSCH. These surveys measure children’s health to varying degrees and occur at different intervals, annual and periodic. (See Appendix D for a comprehensive review of data sets that measure children’s health and related influences.) The Pregnancy Risk Assessment and Monitoring System (PRAMS), another data collection effort conducted by CDC, provides state-specific, population-based information on women’s health during pregnancy, birth outcomes, and the postpartum period. Thirty-seven states currently participate in the PRAMS (CDC, 2010d). The National Survey of Family Growth (NSFG) is a periodic survey of women and men aged 15–44 that collects data on factors related to birth and pregnancy rates (e.g., sexual activity, contraceptive use, and infertility) (Martinez et

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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al., 2010); factors related to marriage, divorce, cohabitation, and adoption (Goodwin et al., 2010); and attitudes regarding sex, childbearing, and marriage (Martinez et al., 2006). In addition, the survey collects a range of social, demographic, and economic data (Lepkowski et al., 2010). The NSFG is considered a significant part of CDC’s public health surveillance for women, infants, and children.

The NHANES is an annual survey that collects data on the health and nutritional status of U.S. adults and children. The survey is administered to a nationally representative probability sample of about 5,000 noninstitutionalized U.S. civilians each year. The NHANES is unique in that it combines interviews and physical examinations of sample respondents (NCHS, 2010a). The interview includes questions regarding diet and health, socioeconomic status, and demographics. The physical examination includes medical, dental, and physiological measurements, as well as laboratory tests. Data from the NHANES are used to determine the prevalence of major diseases and risk factors for diseases, including the prevalence and treatment of mental disorders (Merikangas et al., 2010b), trends in childhood obesity and the prevalence of high body mass index (BMI) (Ogden et al., 2010), and high asthma prevalence among subgroups of children and adolescents (Rodriguez et al., 2002).

The Youth Risk Behavior Surveillance System (YRBSS) monitors priority health risk behaviors among youth and young adults, such as those that contribute to unintentional injuries and violence, tobacco use, and alcohol and other drug use; sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases (STDs); behaviors that contribute to obesity (e.g., unhealthy dietary behaviors and physical inactivity); and those that contribute to asthma. Similar to the NHIS, the YRBSS monitors activities that constitute priority health risk behaviors because they “contribute to the leading causes of morbidity and mortality among youth and adults, often are established during childhood and adolescence, extend into adulthood, are interrelated, and are preventable” (CDC, 2008, p. 1). These behaviors are important to measure because they help in understanding the general quality of life for younger populations. They also provide insight into behavioral trends and health conditions that may evolve into significant health problems as these young people become adults.

In contrast to population health surveys based on diagnosed conditions that fit within the ICD-9 categories, surveys of risk behaviors are designed to identify the behaviors or settings that may contribute to future health disorders as children and youth become adults. In earlier decades, for example, smoking among adolescents was not a health behavior that elicited a medical response. But as the lifetime risks associated with the use of tobacco became well documented among adults, public health and clinical efforts emerged to encourage early intervention and preventive strategies

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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that would reduce the onset and prevalence of smoking behaviors, especially in younger populations.

Strengths

The NHANES is one of the largest and longest-running national sources of health data from a nationally representative sample of U.S. adults. The survey’s sample size is sufficient to detect differences among time periods. One of the survey’s key strengths is its rigorous study protocol for data collection; physical examinations and the collection of biological and environmental specimens adhere to extensive quality control procedures, and technicians are trained and certified in all data collection procedures. To improve the statistical reliability of its estimates, the NHANES has relied on oversampling of certain subgroups, including Latinos, African Americans, adolescents (aged 12−19), adults aged 60 and older, and low-income whites (NCHS and CDC, 2006). As noted in the report Children’s Health, the Nation’s Wealth, both the NHANES and the YRBSS dedicate significant time to interviewing children regarding behaviors related to adverse outcomes (e.g., substance abuse) (IOM and NRC, 2004).

Multiple years of data are available for the NHANES, the PRAMS, the NSFG, and the YRBSS to support trend analysis. These trend data can help states, communities, and schools with program and policy decisions regarding child and adolescent health.

Both the PRAMS and the YRBSS generate state-specific data but also allow comparisons among states through the use of standardized data collection methods. For example, the CDC Model Surveillance Protocol establishes the data collection method for the PRAMS. Participating states follow the protocol but also can customize it to some extent to meet their needs (CDC, 2009). Similarly, the YRBSS questionnaire can be adapted from the CDC-developed core instrument. This flexibility allows states and localities to address their unique needs and goals. The NSFG is one of the few data sources that follow both men and women from adolescence through young adulthood and include service data as well as data on behaviors and outcomes.

Limitations

Surveys of risk behaviors involve more ambiguity and less precision than the collection of data on established conditions. Studies of sexual assault and intimate partner violence, for example, suggest that such experiences often are associated with emotional and mental disorders that are not detected until many years after the initial victimization experience. It is

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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difficult, therefore, to establish clear thresholds for the criteria that should be used in deciding on the inclusion of such indicators in population health surveys.

Despite the need for timely and state-specific data on child health, current data collection efforts are limited in their ability to provide such data. The NHIS and the NSFG have samples that are too small to provide statistically reliable data for every state. It is therefore necessary to combine multiple years of data to obtain useful estimates for most states. The YRBSS and PRAMS are not conducted in every state. The YRBSS depends on local school authorities and state departments of education to conduct the survey, and the sample does not include children who have dropped out of high school or other adolescents who do not participate in high school surveys, a group whose health may be at greater risk relative to the general population. Further, the survey is anonymous, so it cannot be linked to other characteristics of the children sampled. Finally, the YRBSS lacks an established coding system with which to provide an overall “health score” for respondents.

The report Children’s Health, the Nation’s Wealth (IOM and NRC, 2004) provides a thorough explanation of the limitations of the NHIS and NHANES, including sample sizes that are too small to conduct analyses by racial and ethnic subgroups or by ages and stages of development. The report concludes that “neither of these surveys provides the information needed to develop a comprehensive picture of the health of young children, to better understand the role of various risk and protective factors during early childhood, to assess their access to personal or public health services, or to measure the impact of health care on health” (IOM and NRC, 2004, p. 113). Further, for small population groups and less prevalent conditions and diseases, data must be accumulated over several years to provide adequate estimates. The NHANES also lacks the ability to measure important behavioral and mental health conditions (IOM and NRC, 2004).

Some federal data sources monitor selected health behaviors, focusing on specific categories of risky practices, such as the use of alcohol or unsafe sexual behaviors. These federal data sources are scattered across multiple agencies, such as the National Institute on Drug Abuse, the National Institute on Alcoholism and Alcohol Abuse, and the Substance Abuse and Mental Health Services Administration. CDC strives to integrate data from these separate surveys as baseline measures for its Healthy People initiative. However, no single federal database currently monitors a comprehensive set of health behaviors that could incorporate trends involving all of the concerns discussed above.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Functional Status

The decline that has occurred in childhood mortality and the increase in the number of children and adolescents in the United States identified as having chronic health conditions have led to a greater need to measure functional status, or how well children are able to perform their daily activities and their ability to maintain health and well-being (Stein and Jessop, 1990). The report Children’s Health, the Nation’s Wealth defines functioning as “all aspects of physical, psychological, cognitive, and social functioning as they express themselves in children’s daily activities and behavior” (IOM and NRC, 2004, p. 35). This increasingly important aspect of child and adolescent health can be used to estimate the extent of an injury and to gauge the impact of an acute and chronic health condition. Further, measures of functional status offer a fuller picture of how well children are doing compared with mortality and morbidity statistics, which are often single measures (e.g., infant mortality or incidence and prevalence of type 2 diabetes). Functional status measures offer a view into the impact of multiple conditions as well as the effects of their treatment, including side effects (IOM and NRC, 2004), and provide a common measure for assessing the health of children across conditions (Stein and Jessop, 1990; Stein et al., 1987).

There can be either mitigating or complicating factors in functional status, or both, depending on the condition and the affected individual. These may include factors intrinsic to the child (such as personality, genetic endowment, or the existence of comorbidities) or resources and/or conditions external to the child (such as his or her physical environment and support system or the availability of ameliorative medical equipment and medications).

Recent data regarding child and adolescent functional status underscore its significance:

  • In 2007, approximately 8 percent of children aged 5–17 were reported by parents to have activity limitations due to chronic conditions (FIFCFS, 2009).
  • More than 60 percent of children with special health care needs have health conditions that affect their daily activities (FIFCFS, 2009).
  • According to one recent study, overweight and obese adolescents were more likely than adolescents with a normal BMI to report one or more functional limitations (e.g., limitations in attending school, limitations performing strenuous acts, and difficulty with personal care and hygiene) (Swallen et al., 2005).
Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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  • Approximately 1.4 million children with some kind of activity limitation were aged 14−17, a critical period for planning for the transition to adulthood (IOM, 2007).

Knowledge gained from measuring child and adolescent functional status is valuable both for individual- and population-based efforts. At the individual level, measures of functional status have great meaning because of their implications for caregiving, dependence, and the ability to participate in social roles. At the population level, measures of functional status provide insight into demands on systems of care and support, including early intervention and rehabilitation needs, distribution of resources, and housing and transportation issues (Altman et al., 2006). Understanding the functional status of children and adolescents is critical not only for providing support and services today, but also for planning to meet future demands, especially as adolescents’ transition into adulthood (Lotstein et al., 2005).

Given the profound development that occurs over the life course of a child, accurate measurement of physical, psychological, social, emotional, and cognitive status presents significant challenges. Repeated measurement of a child’s or adolescent’s functional status is therefore necessary to determine the impact of a disease or condition over time (to gauge both improvements and deteriorations in health). One major challenge is to develop measures that are “well defined, quantitative, rapid, reliable, minimally dependent on subjective assessments, and applicable to as broad an age range as possible” (Pollack et al., 2009, p. e19).

Currently, health surveys assess functional status through single survey items or nested items (IOM and NRC, 2004). These questions are generally focused on limitations in functioning related to school or play, which are considered the main functional arenas of children. Ideally, functional status would include more complete descriptions of levels of functioning in a variety of settings and roles.

The primary sources of data on functional status are the NS-CSHCN, the NHIS, the NHANES, and the National Longitudinal Study of Adolescent Health (Add Health). Add Health is a longitudinal study of a nationally representative sample of adolescents. It was designed to examine the influence of individual attributes and the impact of social environments (e.g., families, friends, schools, communities, and neighborhoods) on health and risk behaviors. Add Health is currently the largest, most comprehensive survey of adolescents in the United States. The most recent phase of the study included the collection of biological data (e.g., biomarkers for metabolic, immune, and inflammatory processes). These data will provide additional insight into the interactions among social, behavioral, and biological

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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influences on health over time; achievement outcomes in early adulthood; and childhood antecedents of adult disease (Udry et al., 2009).

Strengths

Generally, national health surveys include questions regarding some aspect of a child’s physical health. In fact, measures of functional status are most often focused on measures of physical function (e.g., impairments or deficits in mobility; ability to perform usual activities; or deficits in hearing, vision, or speech). The NHIS, for example, includes questions on limitation of activity in its “child core” to determine limitations in movement and whether the causal impairment is expected to last a year or more. More recently, some surveys—including the NHIS, the NHANES, and to an even greater extent Add Health—have adopted a broader definition of child and adolescent health, and now evaluate aspects of cognitive, emotional, and even social functioning. The NS-CSHCN focuses exclusively on children with special health care needs, and some reports, such as America’s Children (FIFCFS, 2009), which draws on data from a collection of national surveys, address this population. Overall, however, measures of functional status in these sources are relatively limited in nature. Measures that capture the broader perspective of what constitutes health, as defined by Children’s Health, the Nation’s Wealth, are more often included as the focus of issue-specific, one-time surveys rather than in ongoing surveys.

Limitations

One of the most significant gaps in the assessment of child and adolescent health is the evaluation of positive aspects of functional status (IOM and NRC, 2004). Many surveys include questions regarding impairments in functioning; relatively few include routine questions about positive functional trajectories. Overall, ongoing national surveys remain limited in their view of health, so that most of their questions focus on the absence of illness.

As noted earlier, surveys often ask about functioning in terms of limited activity (e.g., the amount of play for children under age 5), but seldom address overall health functioning. This is a significant gap because many children, even those with extreme impairments, are able to play and attend school. Therefore, these measures may be a poor estimate of their overall functioning.

Existing measures of child functional status are time-consuming (Bayley, 1993; Sparrow et al., 2006), apply to a limited age range (CFAR, 1993), or rely heavily on subjective clinician and caregiver assessments (Fiser et al., 2000a, 2000b). Moreover, current efforts to measure functional status do

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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an inadequate job of reflecting the dynamic state of disease and recovery and fail to provide information needed to predict long-term health outcomes. Validation of measures has, for the most part, been restricted to cross-sectional examinations of how scores differ for children with different conditions, and few instruments are suitable for children younger than 5–7. With the exception of the disease-specific scales, little has been done to correlate reports of functional limitations with clinical observations; virtually no predictive validity work has been done that could demonstrate how a measure of functional status at a particular point in time has implications for planning for later services; and it is difficult to reconcile specialized assessments (e.g., developmental milestones, behavior problems, autism symptoms) with general health status. Thus, the lack of measures that assess health potential and provide a more comprehensive assessment of functioning is a significant gap (Pollack et al., 2009). To enhance current efforts to measure child and adolescent functional status, the report Children’s Health, the Nation’s Wealth suggests:

The utility of existing data and a more complete range of data on physical, cognitive, emotional, and social functioning, as well as disability and restriction of activity, would be enhanced by adoption of the WHO International Classification of Functioning (ICF), as it becomes better known by practitioners and survey organizations. This system is designed to inventory different aspects of participation in a wide range of daily activities and to assess the structural and environmental barriers that impede or facilitate functioning. However, it has not yet been adapted to be rapidly used in clinical care or in surveys. (IOM and NRC, 2004, p. 103)

Because WHO’s ICF considers contextual factors of disability—and not just medical or biological dysfunction—it can be used to develop public health goals, form functional status assessments, guide disability management in infectious disease programs, and improve disability statistics in a wide range of settings.

Another opportunity to enhance efforts to measure health functioning and quality of life is the National Institutes of Health’s (NIH’s) Patient-Reported Outcomes Measurement Information System (PROMIS). Although the activities of this network of NIH-funded primary research sites and coordinating centers focuses primarily on adults, its pediatric component is growing and suggests a likely direction for future measurement.

End-of-Life Conditions

Children may experience terminal conditions at various stages in their young lives. Some children start life with a reduced life expectancy, while others contract a life-threatening illness during childhood. The most recent

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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final death counts from NCHS indicate that 53,287 children and adolescents (through age 19) died in 2007 (Xu et al., 2010). The most recent report with a breakdown of deaths among children and adolescents is from 2006. It suggests that end-of-life care likely was needed for the 14.8 percent of young patients (aged 5−14) who died of malignancies, 5.6 percent who died of congenital conditions, and 4.1 percent who died of heart disease (Heron, 2010).

Patients, their families, and physicians are likely to have a difficult time accepting a prediction of imminent death. This is particularly true for children and adolescents, whose families and medical providers do not want to give up on attempts at a cure (Stephenson, 2000). The situation is further complicated by the fact that it can be difficult for physicians to predict time of death with a great deal of accuracy, particularly for children. One study found that in only 20 percent of cases is the date of death reliably predictable within 6 months (Stephenson, 2000), while other authors have noted that this is particularly true for children (Feudtner et al., 2001, 2009). Part of the reason is that children and adolescents can go into and out of terminal illness phases, and in some cases, it may not be clear whether they will ultimately succumb to or recover from an illness (Stephenson, 2000).

According to a previous IOM report, When Children Die, “The National Center for Health Statistics, the National Institutes of Health, and other relevant public and private organizations, including philanthropic organizations, should collaborate to improve the collection of descriptive data—epidemiological, clinical, organizational, and financial—to guide the provision, funding, and evaluation of palliative, end-of-life, and bereavement care for children and families” (IOM, 2003b, p. 355). To date, no national data have been collected for these purposes. Without such data and related measures, it is impossible to monitor progress in helping dying children gain the best possible quality of life.

In 2004, the Nursing Home Survey added questions on advance directives and end-of-life care, and in 2009, the National Home and Hospice Care Survey added questions regarding end-of-life care. To date, no such questions have been included in national surveys of children and their families.

The committee considers it critically important to track end-of-life conditions for children and adolescents. The committee also recognizes that this is a frontier area for measurement in child and adolescent health. When Children Die outlines areas important to children and adolescents experiencing life-threatening and -limiting illnesses, and these areas could form the foundation for data collection and measurement (IOM, 2003b). Chapter 5 looks at end-of-life conditions as they relate to the quality of child and adolescent health care services.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Health Disparities

As for adults, disparities in health status and health care are pervasive in children, with important and often lifelong consequences (Pearlin et al., 2005; Shone et al., 2005). Such disparities exist based on race, ethnicity, primary language, special needs, socioeconomic status, and geography (Callahan and Cooper, 2004; Newacheck et al., 1996; Satcher, 2000; Shone et al., 2003). Each data source in the above five areas provides an opportunity to examine health disparities among selected populations, most frequently racial and ethnic minorities. In most cases, however, the pool of minority populations in the survey samples is not large enough for use in considering health issues that are of particular concern to certain groups or certain regions of the United States. The outcomes of the experience of illness among children and adolescents in poor households may be different from those among children and adolescents with access to greater social and economic resources, but these interactions are extremely difficult to examine. Similarly, health indicators for children and adolescents in urban and rural settings may differ significantly.

Another important characteristic of the major national health surveys is that they automatically exclude children and adolescents who reside in institutional or group care settings. In 2007, nearly half a million (492,818) children lived apart from their families in out-of-home care (CWLA, 2010). Following these children is particularly important as they are at increased risk for mental health disorders (Wasserman et al., 2004), poor developmental outcomes (Jones, 2004), and substance abuse (Shufelt and Cocozza, 2006) relative to children and adolescents in the general population (Otto et al., 1992). The underrepresentation and omission of key groups of vulnerable children and adolescents have prompted the development of targeted surveys that focus on the health status of specific populations, such as children and adolescents in poor households, those served by child welfare agencies, and those in juvenile detention settings.

As noted in Chapter 2, compared with U.S. adults, U.S. children are disproportionately of nonwhite race/ethnicity and more likely to live in poverty or low-income households, and the number of children in these economic circumstances is growing. 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).

In 2010, the Committee on Pediatric Research of the American Academy of Pediatrics (AAP) reported that racial and ethnic disparities in children’s health are “extensive, pervasive, and persistent and occur across the spectrum of health and health care” (Flores, 2010, p. 1). The AAP committee examined 111 original research papers published between 1950

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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and March 2007, focusing on health disparities involving four major U.S. racial/ethnic minority groups: African Americans, Asians/Pacific Islanders, Latinos, and American Indians/Alaska Natives. Health conditions of children and adolescents from each of these four groups were compared with health conditions of white children and adolescents. The AAP committee organized its findings into nine areas: mortality rates, health status, adolescent health, chronic diseases (particularly asthma and mental health), prevention and population health, special health care needs, access to care and use of services, quality of care, and organ transplantation. Highlights from the AAP report include the following:

African American children:

  • African American children have the highest asthma prevalence of any racial/ethnic group. The prevalence rate in this population is substantially higher than that in white children, and the severity of the disease is worse as measured by rates of asthma mortality, hospitalization, and emergency department and office visits. The disparity in rates of asthma mortality and hospitalization has widened over time (Akinbami and Schoendorf, 2002).
  • The mortality rates for young African American children (aged 1–4) are more than twice those for white children; disparities also occur for older children (aged 5−14) (Singh and Kogan, 2007). The mortality disparity ratio has increased in the past decade.

Latino children:

  • Latino children exhibit a wide range of disparities in access to care and use of services in comparison with non-Latino white children, including greater adjusted odds of being uninsured (Flores et al., 2005b), having no usual source of care or health care provider, not having seen a physician in the past year, having gone a year or more since the last physician visit, making fewer physician visits in the past year (Shi and Stevens, 2005), not being referred to a specialist (Flores et al., 2005b), having a perforated appendix (Guagliardo et al., 2003), never or only sometimes receiving medical care without long waits, receiving timely routine care or phone help, and experiencing brief wait times for medical appointments (Brousseau et al., 2005).
  • Relative to non-Latino whites, Latino children have a significantly higher unmet need for mental health care (Sturm et al., 2003) and lower odds of making any mental health visit (Kataoka et al., 2002), receiving an antidepressant prescription (Richardson et al.,
Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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2003), and receiving treatment from a mental health specialist for any mental health condition or behavioral problem (Kataoka et al., 2002).

Asian/Pacific Islander children:

  • Native Hawaiian children have a higher crude mortality rate than that of white children (Singh and Yu, 1996).
  • Disparities have been reported for Asian/Pacific Islander children in the areas of injuries, lead intoxication, obesity, and nutrition (Lee et al., 2006; Neumark-Sztainer et al., 2002; Roesler and Ostercamp, 2000). These children have the highest proportion of elevated blood lead concentrations in the state of Rhode Island and were the only racial/ethnic group whose rate increased over time (Flores, 2010).

American Indian/Alaska Native children:

  • American Indian/Alaska Native children have a firearm injury rate more than seven times higher than that of white children (Roesler and Ostercamp, 2000).
  • These children have higher adjusted odds than white children of being in poor or fair health and the highest prevalence of these suboptimal health ratings of any racial/ethnic group (Grossman et al., 1994).

Oral health disparities parallel overall health disparities, with children of nonwhite race/ethnicity having higher levels of dental disease (HHS, 2000b). Further, oral health disparities by race/ethnicity among children and adolescents have been shown to exist independently of socioeconomic status and attitudes toward preventive care (Dietrich et al., 2008).

Health data from most national population surveys and administrative records include gender and racial/ethnic identifiers that support analyses of health disparities for these categories. However, many researchers have recognized that significant health disparities among children and adolescents result from social determinants associated with access to social or economic resources (Braveman et al., 2004).

One source of data on health disparities is the Survey of Income and Program Participation (SIPP), a continuous series of national longitudinal panels administered by the U.S. Census Bureau. The SIPP collects information on poverty, income, employment, and health insurance coverage from a representative sample of the U.S. civilian noninstitutionalized population. Each panel ranges in duration from 2 to 4 years and includes household

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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interviews every 4 months. In addition to providing longitudinal data from the core survey, the SIPP includes topic modules that provide valuable cross-sectional data on a variety of subjects, including costs and characteristics of child care, adult and child well-being, child disability, general health status, and utilization of health care services (Weinburg, 2003).

The National Survey of Child and Adolescent Well-being (NSCAW) collects nationally representative longitudinal child- and family-level data from children in the child welfare system and their biological parents, caregivers, teachers, and caseworkers, as well as from administrative records. Data are collected through face-to-face interviews at baseline and subsequent annual intervals. The data set consists of two samples of children: those who were the subject of child abuse or neglect investigations conducted by child protective services agencies, and those who had been in out-of-home or foster care for approximately 1 year and whose placement had been preceded by an investigation of child abuse or neglect (NSCAW Research Group, 2002). The data collected address child and family risk factors, service needs and utilization, and agency- and system-level factors likely to be related to child and family outcomes. Child outcomes of interest include health and physical well-being, cognitive and school performance, mental health, behavioral problems, and social functioning and relationships. Multiple years of data are available for secondary analysis through the National Data Archive on Child Abuse and Neglect (NDACAN).

Most of the national surveys (e.g., NHIS, MEPS, and NHANES) also include measures of race/ethnicity and some measures of socioeconomic status that allow for robust analyses of disparities. When sample sizes are small, as is the case when the focus is on specific ethnic groups, these data sets have the advantage of being collected on an annual basis, thereby allowing for data aggregation across two to three years to achieve adequate sample sizes.

Strengths

One of the unique contributions of the SIPP is that, in addition to routinely collecting data on household earnings and employment, it collects data on household composition and medical expenses. Collectively, these data provide insights into disparities and social determinants of health. Further, the SIPP periodically collects data on such topics as shelter costs and assets that enhance understanding of the interplay between socioeconomic well-being and overall health and well-being. Both the SIPP and the NSCAW are longitudinal studies and therefore provide important information on participants over time. Like the SIPP, the NSCAW collects data on nonmedical determinants of health (e.g., community environment, family characteristics, caregiver behavior) that relate to child and family

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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well-being. The NSCAW also documents experiences of children and parents with the child welfare system, other concurrent life experiences, and outcomes by developmental stage to demonstrate how these factors affect children’s well-being.

Limitations

The research literature reporting health disparities for different racial/ethnic groups is uneven in part because the available data on these disparities are uneven. For example, data on Asian/Pacific Islander children are sparser than those on African American or Latino children. Only 24 of the 109 race/ethnicity-specific studies in the AAP Technical Report address disparities in Asian/Pacific Islander children (Flores, 2010). Further, current groupings of Latinos or Asian/Pacific Islanders include culturally heterogeneous subgroups with quite different sets of risks and outcomes (e.g., “Latino” may include Mexicans, Puerto Ricans, and Central Americans). These groupings convey a false sense of homogeneity that may mask disparities.

Disparities that arise from differences in access to social and economic resources and networks are difficult to study in large data sets because socioeconomic information is often limited in routine data sources on health. Often when income information is included, the range of income levels reported is too narrow to permit meaningful comparisons across a range of income groups. For example, the highest income category reported is often “$75,000 or higher”; $75,000 is not a high income level when it supports a family of four to six, a common family size. To understand the role of social factors in child health, one must be able to compare not just poor or low-income persons with everyone else (typically the only comparisons that can be made with most routine data sources), but also risk factors and outcomes among poor, near-poor, low-moderate-income, moderate-income, and high-income groups.

Parental education categories also may be too broad to permit meaningful socioeconomic distinctions. Sometimes income and education are included in the data sets but not in routine reports. One study of more than 20 publications from NCHS released in 2009 revealed that fewer than half examined differences by income (with income usually being considered as a percentage of poverty) or education (most using only three categories—did not complete high school, high school graduate, and at least some postsecondary education) (Braveman et al., 2010).

Furthermore, reliable and complete data with which to measure disparities do not exist in some state-level data sets. In some cases, however, these data can be supplied through linkages. For example, application forms for Medicaid and CHIP are a primary source of information on race, ethnicity,

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

and primary language of the child or family at the state level. Data from accepted applications then inform the state’s Medicaid or CHIP eligibility files. Parent-provided information on race, ethnicity, and language is, therefore, often considered the best source of demographic information.

Some states link these eligibility files with claims files and rely on the eligibility files for demographic data. They can then use the linked data set to examine services delivered to children with given diagnoses by racial, ethnic, or language groups. Hence, the eligibility files are an important platform for measuring disparities in health care. Yet these data are collected in varying, nonstandard ways across states, making the development of a national picture of disparities difficult or impossible. For example, only 18 states include Hispanic/Latino ethnicity as a separate category, while 19 merge ethnic and racial categories. Of these, 7 allow the applicant to choose more than one “race”; hence, an individual could select both black and Hispanic. Eight states have no race/ethnicity categories, instead leaving a blank for applicants to fill in. With respect to primary language, 14 states offer the choice of English, Spanish, and either “other” or specific other languages; however, 21 states have only a blank space in which applicants are to fill in their primary language. The nonstandard way in which race, ethnicity, and language data are collected in eligibility files hinders comparisons of data across states for purposes of monitoring disparities in service delivery (IOM, 2009d). It should be noted that these variations are the result of the uniquely diverse and increasingly multiracial makeup of the United States. It should not be surprising if challenges related to nonresponse and changes in response over time regarding race and ethnicity continue to occur when individuals are asked to self-identify in one category.

Access to NSCAW data is limited, and the data are unavailable for use by potential stakeholders, including, notably, employees at child welfare agencies. The sample size is too small for adequately assessing certain subpopulations of interest, including American Indians/Alaska Natives. Finally, bias due to selection into services could play a significant role in the NSCAW. For example, more challenged children and families receive more services but may still fare worse.

Social Determinants of Health

Studies of the health and wellness of children in vulnerable circumstances have placed particular emphasis on the importance of measuring events, exposures, relationships, or experiences that are present or absent within the child’s or youth’s physical and social environments, particularly those interactions and relationships that support or disrupt bonds essential to healthy development. In the field of youth development, a particular focus is on assessing the presence of caring adults and prosocial relation-

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

ships that support adolescents and young adults during difficult transitions in life. For children and youth with special health care needs, the emphasis has been on the creation of medical homes that can coordinate and monitor their health care across multiple settings and providers. For children and youth with serious emotional disorders, the Substance Abuse and Mental Health Services Administration funds the System of Care initiative to provide supportive settings for limited communities.

This interest in assessing the impact of the physical environment, the health care delivery system, and social contexts on the current health status and healthy development of young people has generated several key studies aimed at linking specific childhood experiences, events, or relationships with selected health behaviors and health outcomes. Yet few population health databases include data on indicators of positive health (e.g., self-esteem, resiliency, and social support) for children and adolescents. Furthermore, few sources of data on the health indicators discussed in the preceding sections support examination of the relationships among these indicators, the social contexts of children and youth (including family, peer, and community relationships), and their health care services and settings.

The YBRSS and NSCH, discussed above, provide data relevant to social determinants of child and adolescent health. A third source of such data is a new initiative, the National Children’s Study (NCS). As discussed in Chapter 3, the NCS is the largest long-term study of environmental and genetic effects on children’s health ever undertaken in the United States. It will examine the effects of environmental influences on the health and development of approximately 100,000 children across the United States, following them from before birth until age 21 (NRC and IOM, 2008). Data collected by the NCS will be archived over time and are intended to serve as a valuable resource for analyses many years into the future.2 This ambitious undertaking has the potential to provide much-needed insights into nonmedical determinants of health, among other critical aspects of child and adolescent health. In 2008, the National Research Council (NRC) and the IOM conducted an in-depth review of the NCS study design and research plan (NRC and IOM, 2008). The strengths and weaknesses of the study are described briefly below.3

Strengths

Two of the greatest strengths of the NCS are its large sample size (100,000), which will facilitate analyses of both common and rare con-

____________

2 As of early 2011, the NCS was in its pilot phase (NIH, 2010c).

3 For a more in-depth review, see The National Children’s Study Research Plan: A Review (NRC and IOM, 2008).

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

ditions, and its longitudinal design (preconception through age 21). The probability sample also was notably well designed (NRC and IOM, 2008). The prospective data collection should minimize the effect of potential recall errors.

Limitations

Questions remain regarding the feasibility of the NCS recruitment strategy (specifically with respect to enrolling women in their homes who are likely to become pregnant, as opposed to recruiting pregnant women from prenatal sites of care) (Savitz and Ness, 2010), as well as plans for managing the data collection and participant retention (NRC and IOM, 2008). The NRC and IOM (2008) report also raises concerns regarding the adequacy of the study’s pilot phase. Aside from asthma, the NCS does not have a sufficient number of children with specific conditions to permit detailed analyses of the quality of care. It should be noted that in August 2008, those responsible for the NCS issued an extensive response to the NRC/IOM review, and in the intervening years they have worked to address several of the report’s recommendations.4 The ultimate value of the study, however, is unknown, and will depend on its ability to address the shortcomings identified in the present report.

A Life-Course Approach

The life-course approach helps explain patterns of health and disease across populations and over time. Chapter 2 describes the growing recognition of the ways in which health influences occurring during early childhood—and even interactions with maternal health during the prenatal and preconception stages—lay the foundation for health throughout the lives of children, adolescents, and adults (Ben-Shlomo and Kuh, 2002; Halfon and Hochstein, 2002; Kuh and Ben-Shlomo, 1997).

Fine and Kotelchuck (2010) identify four key life-course concepts:

  • Today’s experiences and exposures influence tomorrow’s health. (Timeline)
  • Health trajectories are particularly affected during critical or sensitive periods. (Timing)
  • The broader community environment—biologic, physical, and social—strongly affects the capacity to be healthy. (Environment)

____________

4 For additional information, see http://www.nationalchildrensstudy.gov/newsannouncements/announcements/Pages/ncs_response_NAS_review_082608.pdf.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×
  • While genetic make-up offers both protective and risk factors for disease conditions, inequality in health reflects more than genetics and personal choice. (Equity)

Existing measurement efforts are limited in their ability to provide complete information related to timeline, timing, environment, and equity. However, these four concepts are drawing growing attention and provide a basis for the development of new approaches in measuring child and adolescent health.

One aspect of the life-course perspective that has drawn particular attention is the proposal that broad social, economic, and environmental factors may affect health during critical periods of development (e.g., factors associated with the childhood antecedents of adult disease, including those that emerge during fetal development, childbirth, early infancy, and the transition into adulthood). For example, numerous studies have demonstrated an association between negative stimuli, such as undernutrition during fetal development, and lasting or lifelong consequences for health (Alexander, 2006; Barker, 2002; Godfrey and Barker, 2001). Disruptions in fetal and organ development, known as “fetal programming,” may increase vulnerability to environmental stressors later in life and have been observed to be associated with coronary heart disease (Barker, 2002) and hypertension (Alexander, 2006). Poor health in childhood also can have significant and long-term implications for educational attainment, socioeconomic status, and productivity. As noted in Chapter 2, for example, analyses of the Panel Survey of Income Dynamics (PSID) reveal that low birth weight has the effect of “aging” an individual by 12 years (Johnson and Schoeni, 2007).

Because the life-course perspective is inherently based on the idea that health is more than the absence of disease, it aligns well with the expanded definition of health adopted by the committee. Moreover, the life-course perspective provides a dynamic approach to monitoring and measuring child and adolescent health and encompasses the seven priority areas for child and adolescent health outlined earlier. Therefore, the committee regards the life-course perspective as an overarching area of focus for measurement.

In addition to life-course indicators, interest has grown in looking beyond the measurement of specific health conditions to focus on positive states of health, wellness, functioning, and health potential during important transition periods, especially early childhood and adolescence. Attention is increasingly being paid to the importance of monitoring the presence of healthy behaviors, such as adequate sleep, good dietary habits, and physical activity. Attention is being focused as well on assessing the mental and emotional status of children and youth, including their safety,

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

resiliency, and capacity to deal with the stresses of daily life, as well as the challenges of certain health conditions, harsh environments, or traumatic experiences. Moreover, many experts in child health and development have emphasized the importance of assessing the functional and developmental status of children and adolescents, focusing on measures that describe their language and motor skills, as well as their capacity to self-regulate their emotions, interact with peers and adults, and perform age-appropriate tasks. Such measures are not commonly viewed as health measures, but they are included in several child and adolescent health surveys and provide indicators of the functional or developmental status of general and selected populations of children and youth.

Currently, the concept of indicators of positive states of health, functioning, and development is relatively new, and a coherent set of priority indicators in these areas is lacking. Children’s Health, the Nation’s Wealth (IOM and NRC, 2004) focuses particular attention on the interactions among children’s health; health care services; and health influences, such as poverty and the physical environment. The report recommends several steps, such as integrating existing data sets and offering a conceptual framework that could make better data on these interactions available at the national, state, and local levels (IOM and NRC, 2004).

The literature on developmental milestones is complex since certain behaviors or conditions emerge over several months or years. As a result, it is often difficult to assess developmental status at a specific point in time; such measures require iterative assessments that may involve lengthy intervals and periods of observation. Measures of developmental status may also be subject to extensive bias or variation since they frequently rely on parental reports rather than observation by practitioners who are experienced with the behaviors of large groups of children. Indeed, because many behaviors indicative of poorer functioning or illness cannot be observed during a standard pediatric exam (e.g., sleep, feeding, and behavioral problems), clinicians also must frequently rely on parental reports. Thus there is a clear need to devise better ways of obtaining these data from parents (e.g., questions framed in ways that require less parental inference and more objective behavioral accounts).

Children’s Health, the Nation’s Wealth (IOM and NRC, 2004) calls particular attention to the need for measures focused on resources that contribute to health and well-being, especially in describing a child’s ability to deal with and bounce back from adversity. It defines health potential as “health assets that provide the capacity to respond to physical, psychological, and social challenges and risk states that increase vulnerability to other aspects of poor health” (IOM and NRC, 2004, p. 37). The report distinguishes measures of health potential from measures of child functioning

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

“because of the inherent bias toward defining functioning only as normal or deficient”:

The domain of health potential measures includes positive developmental assets and health capacities that provide and indicate ability to form positive relationships, regulate emotional and cognitive states, and respond to multiple challenges, including exposures to disease and psychological and physical stress, among others….. Other characteristics described as resilience factors that fall within this domain include curiosity, responsiveness, reflection, imagination, self-efficacy, problem-solving ability, self sufficiency, optimism, and disease resistance and recovery. (IOM and NRC, 2004, p. 37; see also Starfield et al., 1993)

Two data sources are particularly relevant to a life-course perspective on child and adolescent health: Add Health (discussed above) and the Adverse Childhood Experiences (ACE) study. The ACE is an ongoing collaboration between CDC and Kaiser Permanente’s Health Appraisal Clinic in San Diego, designed to assess associations between a range of adverse childhood experiences and health behaviors, health outcomes, and health care use later in life (Felitti et al., 1998). With more than 17,000 participants, the ACE is considered one of the largest studies of its kind (CDC, 2010b). It has produced numerous publications suggesting that certain experiences—including childhood abuse, neglect, and exposure to other traumatic stressors—are risk factors for some of the leading causes of morbidity and mortality in the United States (Anda et al., 2008; Brown et al., 2010; Corso et al., 2008; Dong et al., 2004; Dube et al., 2001; Edwards et al., 2004; Felitti et al., 1998). In addition to Add Health and the ACE, in 2008 five states collected data on adverse childhood experiences as part of the Behavioral Risk Factor Surveillance Survey (BRFSS). The BRFSS is a state-based telephone health surveillance survey conducted by state and local health departments under the guidance of CDC. The survey collects data on health risk behaviors, preventive health practices, and health care access. It is used by all 50 states, the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands; more than 400,000 interviews are conducted each year. BRFSS data can be used to identify and track emerging health problems (e.g., the H1N1 influenza pandemic) and monitor progress toward health objectives (e.g., those of Healthy People).

Strengths

The ACE provides insight into the long-term and potentially multigenerational impacts of adverse childhood experiences. The study, now in its thirteenth year, continues to gather data prospectively on participants from a variety of sources (e.g., outpatient medical records, pharmacy use

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

records, hospital discharge records) to follow their health outcomes and use of health care services (CDC, 2010c).

Limitations

The retrospective reporting of childhood experiences is a potential limitation of the ACE. Respondents may find it difficult to recall specific events. In cases in which childhood abuse has been documented, for example, adult respondents are likely to underestimate the actual occurrence of the abuse upon follow-up (Femina et al., 1990; Williams, 1995). Another limitation relates to the sample included in the ACE. The majority of ACE participants are white (74.8 percent), middle-class adults, the overwhelming majority of whom have completed high school, attended college, or completed college and/or beyond (92.8 percent) (CDC, 2010a). These demographic characteristics limit the extent to which the findings of the study can be generalized.

TIMELINESS, QUALITY, PUBLIC TRANSPARENCY, AND ACCESSIBILITY OF DATA ON CHILD AND ADOLESCENT HEALTH

In its charge, the committee was asked to focus particular attention on the timeliness, quality, public transparency, and accessibility of data on child and adolescent health. Timeliness is a critical element in the assessment and development of measures, as more rapidly released public-use files provide a far more accurate picture of existing conditions than those released long after data collection (NRC, 2010). Public transparency depends on the timely availability and accessibility of quality data to reinforce accountability on the part of responsible agencies (Beal et al., 2004; IOM, 2001a).

A number of online sources are designed to advance the timely and effective use of public data on children, youth, and families in the United States. Box 4-2 includes examples of accessible data sets across the seven priority areas for child and adolescent health that can be used by families, researchers, insurers, policy makers, and advocates to assess the health and mortality experiences of children and adolescents. These include public data sets, aggregations and syntheses of public data (see the next section), and sources that integrate public and private data.

AGGREGATING, SYNTHESIZING, AND LINKING MULTIPLE DATA SOURCES

Title V of the Social Security Act requires annual reporting of state performance and health outcome measurement data, fiscal data and num-

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

bers of clients served (individual, source, and service type), screening and treatment data, state priority needs, state Title V initiatives, maternal and child health (MCH) toll-free hotline data, and CSHCN service system data (MCHB, 2010). Although these data are posted in a timely fashion to the Title V Information System website, the data collected on child and adolescent health exist largely in individual silos and are not readily translatable to the seven priority areas discussed above.

In the absence of population or administrative data sources that can link specific experiences or events to selected health behaviors in individual children, many researchers rely on linking selected data sources at the geographic level—for example, census tracts, counties, or states. Typically they link one of the individual-level data sources discussed above with another data source describing the social contexts of children and youth as proxy measures for adverse or supportive environments in a child’s census tract, county, or state. Such data include measures describing education, employment, income, and community crime trends for national or regional populations of children and youth.

Box 4-3 provides examples of efforts to aggregate, synthesize, and link data from multiple sources. These include state, local, and national efforts using both publicly and privately collected data. Key sources of data for these efforts include the Current Population Survey (CPS), the American Community Survey (ACS), the National Survey of American Families (NSAF), the National Center for Education Statistics (NCES) surveys, the NVSS, and the BRFSS, among others.

Strengths

Aggregating, synthesizing, and linking data from multiple data sources allows agencies and organizations to convey trends in child and adolescent health to policy makers and the general public. These efforts often generate easy-to-understand reports, fact books, and online tools.

Limitations

Unfortunately, linking multiple data sources cannot capture the dynamics of child and adolescent health and does not provide insight into the interactions among various influences on child and adolescent health. The data sets are frequently based on cross-sectional data, a disadvantage for any effort to link multiple data sources. At present, moreover, financial barriers hinder the ability to access deidentified Medicaid files for purposes of cross-state quality measurement. As a result, current efforts to aggregate, synthesize, and link data result in something more akin to a mosaic than a snapshot of child and adolescent health, falling short of the goal of provid-

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

BOX 4-2
Selected Online Sources of Data on Child and Adolescent Health

  • Behavioral Risk Factor Surveillance System (BRFSS) Interactive Databases provide online access to the state-based system of health surveys that collects information on health risk behaviors, preventive health practices, and health care access primarily related to chronic disease and injury (http://www.cdc.gov/brfss/).
  • CPONDER is a web-based query system created to access data collected through Pregnancy Risk Assessment Monitoring System (PRAMS) surveys. Users have the ability to design their own analysis by choosing from an indexed list of available categorical variables. Descriptive statistics in the form of proportions are included in the resulting report and corresponding graph. CPONDER contains PRAMS data from 2000 through 2006 for state/year combinations that achieve at least a 70 percent response rate. CPONDER contains 2007 data for PRAMS state/year combinations that achieve at least a 65 percent response rate. As additional years of data are weighted, they will be added to the system (http://www.cdc.gov/prams/cponder.htm).
  • DATA2010 is an interactive database system developed by staff of the Division of Health Promotion Statistics at the National Center for Health Statistics, and contains the most recent monitoring data for tracking Healthy People 2010. Data are included for all the objectives and subgroups identified in the Healthy People 2010: Objectives for Improving Health. DATA2010 contains primarily national data. However, state-based data are provided as available (http://wonder.cdc.gov/data2010/).
  • The Data Resource Center for Child and Adolescent Health (DRC) provides online access to the survey data that allows users to compare state, regional, and nationwide results for every state and HRSA region as well as resources and personalized assistance for interpreting and reporting findings. DRC includes data from the National Survey of Children’s Health (NCHS) and the National Survey of Children with Special Health Care Needs (NS-CSHCN) (http://www.childhealthdata.org/content/Default.aspx).
  • HCUPnet is a web-based interactive service for identifying, tracking, analyzing, and comparing statistics on hospital care. HCUPnet was created with the intention to make health care data available to the public. HCUPnet allows anyone to access aggregate statistics from these data sets to generate descriptive statistics on many topics of interest, including, for example, the percentage
Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×
  • of hospitalizations for children who are uninsured by state, trends in hospital admissions for specific conditions, quality indicators and information on the expenses of conditions treated in hospitals (http://hcupnet.ahrq.gov/).

  • Health Data Interactive presents tables with national health statistics for infants, children, adolescents, adults, and older adults. Tables can be customized by age, gender, race/ethnicity, and geographic location to explore different trends and patterns (includes the following data sources: Current Population Survey [CPS], National Ambulatory Medical Care Survey [NAMCS], National Health and Nutrition Examination Survey [NHANES], National Health Care Survey [NHCS], National Health Interview Survey [NHIS], National Home and Hospice Care Survey [NHHCS], National Hospital Ambulatory Medical Care Survey (NHAMCS), National Hospital Discharge Survey [NHDS], National Vital Statistics System [NVSS] [mortality and natality], and population estimates) (http://www.cdc.gov/nchs/hdi.htm).
  • MEPSnet/HC is an interactive query tool that generates statistics of health care use, expenditures, sources of payment, and insurance coverage for the U.S. civilian noninstitutionalized population. However, none of the Child Health and Preventive Care section variables are available on MEPSnet/HC (http://www.meps.ahrq.gov/mepsweb/data_stats/MEPSnetHC.jsp).
  • National Center for Health Statistics. Data files for the National Survey of CSHCN can be downloaded in SAS file format at no cost from the National Center for Health Statistics website (http://www.cshcndata.org).
  • National Immunization Survey Public Use Data Files are available for statistical analysis or reporting purposes through the National Center for Health Statistics (http://www.cdc.gov/nis/data_files.htm).
  • WISQARS™ (Web-based Injury Statistics Query and Reporting System) is an interactive database system that provides customized reports of injury-related data (http://www.cdc.gov/injury/wisqars/index.html).
  • Youth Online is an online database allows users to analyze national, state, and local Youth Risk Behavior Surveillance System (YRBSS) data from 1991-2009. Data from high school and middle school surveys are included. Users can filter and sort on the basis of race/ethnicity, sex, grade, or site, create customized tables and graphs, and perform statistical tests by site and health topic (http://apps.nccd.cdc.gov/youthonline/App/Default.aspx?SID=HS).

____________

NOTE: Descriptions are verbatim from source websites.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

BOX 4-3
Examples of Efforts to Aggregate, Synthesize, and Link Multiple Data Sources

State and Local Governments/Health Departments

California Report Card (Children Now)

The Children’s Agenda (Montgomery County, Maryland)

Children’s Score Card (Los Angeles County)

Delaware Children’s Health Chartbook (Nemours)

MassCHIP (Massachusetts Department of Public Health)

North Carolina Child Health Report Card (Action for Children North Carolina, NC IOM)

National

America’s Children: Key National Indicators of Well-Being (Federal Interagency Forum on Child and Family Statistics)

America’s Health Starts with Healthy Children: How Do States Compare? (Robert Wood Johnson Foundation)

The Child and Youth Well-Being Index (The Foundation for Child Development)

Child Health USA (Health Resources and Services Administration/Maternal and Child Health Bureau)

Child Trends DataBank (Child Trends)

The Child Well-Being Index (The Foundation for Child Development) Indicators of Youth Health and Well-Being: Taking the Long View (Stagner and Zweigl, 2007)

Key Indicators of Health and Safety: Infancy, Preschool, and Middle Childhood (Hogan and Msall, 2008)

Kids Count (Annie E. Casey Foundation)

Appendix A: Datasets for Measuring Children’s Health and Influences on Children’s Health, in Children’s Health, the Nation’s Wealth (IOM and NRC, 2004)

Appendix B: Gaps Analysis of Measures of Children’s Health and Influences on Children’s Health in Select National Surveys, in Children’s Health, the Nation’s Wealth (IOM and NRC, 2004)

Appendix C: Selected Indicators from National Children’s Data Syntheses, in Children’s Health, the Nation’s Wealth (IOM and NRC, 2004)

ing a complete and accurate picture. Technology may make it possible to achieve this goal in the near future. Chapter 2 provides a brief overview of the implications of health information technology (HIT) for child and adolescent health. A more in-depth analysis of future implications of HIT for health and health care services is provided in Chapter 6.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

EFFORTS TO MAKE DATA MEANINGFUL BY LINKING POPULATION HEALTH INDICATORS AND PUBLIC HEALTH INTERVENTIONS

During the past three decades, efforts have been undertaken within public health and child advocacy centers to link population health data with national, state, and local initiatives designed to ameliorate those factors that contribute to adverse health outcomes for children and youth. These efforts have emphasized identifying health conditions and behaviors that would benefit from public health interventions, as well as changes in social and economic settings, as opposed to medical treatments. Three such efforts are the Healthy People program, administered by CDC; County Health Rankings, developed within several states and published by The Robert Wood Johnson Foundation; and the Kids Count initiative, funded through the Annie E. Casey Foundation.

The Healthy People 2010 and forthcoming Healthy People 2020 objectives provide a comprehensive agenda for nationwide health promotion and prevention of disease, disability, and premature death; they serve as a road map for improving the health of all Americans during the first decade of the 21st century. CDC relies extensively on health measures drawn from the NHIS and other data sources in the implementation of the Healthy People initiatives (HHS, 2000a).

Healthy People 2010 includes 28 focus areas with 467 specific objectives. One of the 28 focus areas is maternal, infant, and child health, and 107 of the objectives pertain to adolescents and young adults. The two overarching goals of Healthy People, which are applicable across the life course, are to increase quality of life and years of healthy life and eliminate health disparities. A recent report on progress toward the Healthy People 2010 objectives describes mixed results for child and adolescent health. On the one hand, between 1996 and 2008, exposure of children to tobacco smoke at home and exposure to environmental tobacco smoke showed significant progress (reductions of 69.2 percent), and immunization of children aged 19–35 months increased by 10.9 percent. On the other hand, overweight in children and adolescents increased by 58.7 percent (Sondik et al., 2010).

Efforts to finalize the Healthy People 2020 objectives have been under way since December 2010. Early indications point to a continued commitment to eliminating health disparities and a greater focus on the social determinants of health that have a disproportionate impact on specific racial/ethnic populations (Sondik et al., 2010). Two new overarching goals will be added: “promoting quality of life, healthy development, and healthy behaviors across life stages; and creating social and physical environments that promote good health” (Koh, 2010, p. 1656).

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

The Robert Wood Johnson Foundation’s County Health Rankings ranks the overall health of every county in all 50 states. The rankings are based on a model of population health that includes health outcomes (based on equal weighting of length and quality of life) and health factors (weighted scores for health behaviors, clinical care, social and economic factors, and the physical environment) (see Figure 4-1) (Booske and UWPHI, 2010). The rankings are based on data from multiple sources, including

  • the BRFSS;
  • the NCHS;
  • the National Center for Chronic Disease Prevention and Health Promotion (Division of Diabetes Translation);
  • the National Center for Hepatitis, HIV, STD, and TB Prevention;
  • the Environmental Protection Agency (EPA) Collaboration;
  • the Health Resources and Services Administration;
  • the CPS;
  • the Federal Bureau of Investigation;
  • Medicare claims; and
  • the National Center for Education Statistics.

Bethell (2010) has identified four key questions to be considered in aligning population health indicators with efforts to improve the quality of health care services for children and youth:

  • Should the emphasis be on leading causes of death and most common reasons for using medical care or on the prevalence of ongoing health conditions (also described as the low-volume/high-cost versus high-volume/low-cost trade-off)?
  • Should the population health measures be condition-specific (e.g., reflect the ICD categories), or should the broad-based, consequences-focused definition used in the survey of children with special health care needs (NS-CSHCN) be adopted?
  • What effort should be directed toward indicators of risk versus established conditions (e.g., overweight and obesity, or risks for developmental delay or substance use)?
  • Should population health indicators aim to address categories of conditions (e.g., mental and behavioral health, oral health, injuries)?

SUMMARY

This chapter has reviewed the relative strengths and limitations of measures of the health of children and adolescents based on population

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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images/p131.jpg

FIGURE 4-1 County Health Rankings model.
SOURCE: Booske and UWPHI, 2010.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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health and administrative data sources. This review has highlighted the diversity and complexity of existing measures while calling attention to areas in which existing data systems are insufficient to address key topics of interest. For example:

  • A lack of standardization in the measurement of disparities in health limits the ability to identify, monitor, and address persistent health disparities among children and adolescents.
  • Current child health measures lack the capacity to capture important functional data and developmental stages; valid measures in these areas that have been tested across diverse populations do not yet exist.
  • Most child and adolescent health data sets lack the capacity to support efforts to track the life-course implications of child health events, especially those that occur in early stages of development.

The committee has identified seven priority areas for future measures that could provide relevant information on the health of children and adolescents for policy makers, service providers, and the general public and also inform quality improvement efforts within public and private health plans. The committee also has emphasized the importance of using a life-course approach, which may require changes to current public- and private-sector criteria and methods for the selection of existing and the development of new health quality measures. Indicators generated from data acquired with a life-course perspective in the seven priority areas should make it possible to examine specific conditions and issues of particular importance to vulnerable and underserved children and adolescents, especially those served by Medicaid and CHIP programs. Such conditions and issues might include

  • gestational and perinatal issues that impact child health, such as prenatal care;
  • unique neonatal issues, such as prematurity and low birth weight;
  • health issues in the transition of those with chronic illnesses from adolescence to young adulthood (particularly in light of health reform changes that include coverage of children under their parents’ health insurance until age 26);
  • chronic childhood conditions that impact adult health, such as Down syndrome, cystic fibrosis, childhood cancer, and congenital heart defects; and
  • opportunities presented by the NCS, which will follow subjects from preconception to age 21.
Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

Ideally, child and adolescent health quality measures should support analyses that can demonstrate how changes in funding levels for public insurance programs (such as Medicaid or CHIP) or changes in eligibility requirements, enrollment levels, or service procedures would affect child health outcomes, school achievement, and health care costs. Such measures should also be useful in assessing whether and how the organization and delivery of health care achieve public goals of effectiveness, efficiency, safety, timeliness, equity, and patient satisfaction. Realizing these goals will require capacity for state-level analyses because Medicaid and CHIP are executed and managed at the state level, and there has historically been significant state-level variation in eligibility, coverage, and access to providers.

Additional themes that deserve attention include the following:

  • the distinction between low-incidence/high-cost conditions and those that reflect the most common child and adolescent health disorders;
  • significant trends in child health, health care access and quality, and outcomes (e.g., immunization coverage rates);
  • indicators of resilience and protective factors/effects; and
  • comorbidities (because of their potential multiplier effects).

Finally, the seven priority areas, as well as a life-course perspective, should be used to direct analysis toward possible emerging threats to child health as a test of how comprehensive and useful this taxonomy can be in generating priority indicators for child and adolescent health.

Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
×

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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Suggested Citation:"4 Existing Measures of Child and Adolescent Health." Institute of Medicine and National Research Council. 2011. Child and Adolescent Health and Health Care Quality: Measuring What Matters. Washington, DC: The National Academies Press. doi: 10.17226/13084.
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Increasing public investments in health care services for low-income and special needs children and adolescents in the United States have raised questions about whether these efforts improve their health outcomes. Yet it is difficult to assess the general health status and health care quality for younger populations, especially those at risk of poor health outcomes, because the United States has no national information system that can provide timely, comprehensive, and reliable indicators in these areas for children and adolescents. Without such a system in place, it is difficult to know whether and how selected health care initiatives and programs contribute to children's health status.

Child and Adolescent Health and Health Care Quality identifies key advances in the development of pediatric health and health care quality measures, examines the capacity of existing federal data sets to support these measures, and considers related research activities focused on the development of new measures to address current gaps. This book posits the need for a comprehensive strategy to make better use of existing data, to integrate different data sources, and to develop new data sources and collection methods for unique populations. Child and Adolescent Health and Health Care Quality looks closely at three areas: the nature, scope, and quality of existing data sources; gaps in measurement areas; and methodological areas that deserve attention.

Child and Adolescent Health and Health Care Quality makes recommendations for improving and strengthening the timeliness, quality, public transparency, and accessibility of information on child health and health care quality. This book will be a vital resource for health officials at the local, state, and national levels, as well as private and public health care organizations and researchers.

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