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Appendix B
Gaps Analysis of Measures of Children’s Health and Influences on Children’s Health in Select National Surveys
INTRODUCTION AND PURPOSE
This appendix examines selected national surveys to assess the current status of children’s health measurement and monitoring at the national level. This review is intended to inform an assessment of the current national approaches to measuring children’s health using survey methods. We examined 12 national surveys that collect information on children’s health and both its social and medical influences. Specifically, we gathered data on the design and reach of the surveys (Table B-1) and on the following aspects of child health:
Health conditions (Table B-2)
Children’s health status, functioning, and health potential (Table B-3)
Influences on children’s health (Table B-4)
The surveys that we reviewed encompass the vast majority of large, nationally representative, and publicly available efforts to collect information about children’s health and the individual, social, economic, and medical care influences of health as defined broadly. The review incorporates both public and private initiatives; one-time and ongoing surveys (only the most current version); longitudinal and cross-sectional designs; and surveys focusing on different child age groups. While many other nationally representative studies have been conducted by individual researchers and organizations, most of these are not publicly available and are limited to very narrow topics, making them less useful for monitoring national child health issues over the long term. While these surveys or data collec-
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tion systems are important sources of child health information, they are not comprehensive enough to allow for detailed examination of patterns, trends, and disparities in health.
The surveys are ordered from left to right according to the design and frequency of the survey. Organized from left to right are ongoing cross-sectional national surveys of children’s health, followed by shorter duration or paneled longitudinal design surveys, and then small one-time specialty surveys. For each survey, we summarize key aspects of the design, including the frequency, origin date, sponsor, research design, sample size, age-group focus, and respondent (Table B-1). We then review, in Tables B-2 through B-4, the child health measures and influences on child health. Each child health topic is coded with a somewhat arbitrary system that indicates whether the topic is measured “comprehensively” (defined as three or more questions), “adequately” (defined as one or two questions), through a biological or physical mechanism (e.g., blood test), using data from a birth certificate, or not at all. The variables examined in the tables are organized and correspond with the structure of the report. Note: Some questions included in the tables (e.g., MEPS) are asked only of specific age groups (e.g., ages 5-17).
SUMMARY RESULTS OF THE REVIEW
The review identifies patterns of health topics that are commonly covered in national health surveys as well as gaps in which topics have rarely or never been addressed. We discuss the results with respect to whether the survey was a one-time endeavor or an ongoing initiative in order to analyze the consistency of data on specific topics. We also briefly discuss the measurement of race and ethnicity across surveys because of the national focus on eliminating racial and ethnic disparities in health.
Measurement of Children’s Health Conditions
Many of the national surveys ask parents to report on specific health conditions that are common among children and adolescents. The most common conditions are asthma, mental disorders (measured broadly), infectious diseases, pregnancy among teens, and child injuries. These conditions, however, were measured in no more than half of all the surveys. While the National Health Interview Survey (NHIS) and the National Health and Nutrition Examination Survey (NHANES) assess the greatest breadth of conditions, NHANES collects the most comprehensive and detailed information on specific conditions. Because NHANES collects biological samples from children (usually a blood test) to assess the presence of certain conditions, it also has the potential to collect things such as biomarkers.
Despite the comprehensiveness of NHIS and NHANES, there remain some gaps in the measurement of children’s health conditions across surveys. Among
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the newer morbidities are mental health conditions such as Attention Deficit Disorder and Attention Deficit Hyperactivity Disorder (ADD/ADHD) and depression, and these conditions (though commonly diagnosed) are usually not included in national surveys of child health. Difficulty in identifying and measuring these conditions (beyond parent report of diagnosis) is likely to be a barrier to more frequent inclusion in large national surveys. Screening for the presence of a condition, such as depression or ADHD, often involves the use of 10 or more questions, which can take up a relatively large amount of scarce interview time. There are other nonsurvey data sources, however, that exist for monitoring child health conditions, including the annual National Ambulatory Medical Care Survey that collects data from medical offices about patient symptoms, diagnoses, and ambulatory care provided.
Measures of Child Health Status, Functioning, and Health Potential
Nearly every national survey assesses some aspect of a child’s physical health. The majority of the measures currently in national surveys relate to aspects of physical functioning and impairments or deficits in mobility, ability to do usual activities, or more specific deficits in hearing, vision, or speech. Some more recent surveys have tended to adopt broader perspectives on children’s health, evaluating aspects of cognitive, emotional, and even social functioning. The broader perspective of what constitutes health is not routinely included in ongoing surveys but is rather the focus of more detailed and topic-specific one-time surveys.
The largest apparent gaps in the assessment of children’s health are in the evaluation of health potential (or rather more positive aspects of development and functioning). While many surveys asked about impairments in functioning, only a handful of one-time studies actually incorporated questions about positive developmental and functional trajectories, such as positive personal affect or self-sufficiency. Refined understandings of health and well-being recognize that health is more than merely the absence of illness, although this is yet to be reflected in ongoing national surveys of children’s health.
Measures of Family and Community Influences on Health
National surveys of child health have made tremendous steps in recognizing the importance of family determinants on child development. Nearly every survey measures race and ethnicity and some aspect of socioeconomic status (most commonly income and education) of the family. Many of the one-time special surveys have also recognized the contribution of family composition to children’s health and the threats to development that are potentially associated with family disruptions (such as divorce), parent health status, and aspects of parenting (such as discipline and providing rich learning environments). Of particular interest is the recent attention given to the role of child care (both formal and informal) in
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national surveys. For example, the Early Childhood Longitudinal Study—Birth Cohort (ECLS-B) not only asks a series of questions to parents about their child care needs and beliefs, but also interviews the care providers and directors of the child care centers themselves. Interestingly, the ECLS-B also incorporates direct observation of child care practices to assess the quality of care that is provided.
While substantial progress has been made with the evaluation of family influences on health, few national surveys incorporate questions about community factors that may influence children’s health and development. Add Health is one of the few surveys to ask questions about community socioeconomic level, community unemployment rates, physical safety in the community (e.g., school and housing safety), and aspects of the social organization of the neighborhood (e.g., social cohesion, diversity, and social networks). Uniquely, Add Health further incorporates the use of direct observation of neighborhoods to note the safety of the neighborhood, housing adequacy, and other factors. While these community factors are increasingly known to influence children’s health, they are rarely included in ongoing national surveys.
Measurement of Health System Influences on Health
National surveys of child health also frequently assess the influences of health systems on children’s health and development, most often incorporating measures of access to care and health service use. Ongoing surveys also seem to focus on childhood immunizations in order to support national efforts to monitor children’s immunization status. Health insurance is covered in all but three of the surveys.
Measures of quality of health care, particularly those examining more qualitative aspects of care (e.g., patient-provider interpersonal factors), are underrepresented in the ongoing national surveys. Coordination of care is nearly non-existent in the surveys, with the exception of the National Survey of Children with Special Health Care Needs, which examines experiences of children with special health care needs. Relatively little information is provided on the content of care, particularly the receipt of childhood preventive services other than immunizations. The National Survey of Early Childhood Health (NSECH) comprehensively asks parents about preventive services they have received, and uniquely ascertains whether the parents who did not receive the services would have found them helpful. This allows for some analyses of missed opportunities to provide needed preventive care. The NSECH is a one-time endeavor, but it may serve as a model for incorporation of preventive care questions into ongoing national surveys.
CONCLUSION AND FUTURE CONSIDERATIONS
When considered together, this collection of national surveys covers a very large number of domains of children’s health and many family, community, and
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medical influences on their health and development. When considered individually (because information from across surveys can rarely be combined), there remain substantial gaps in what is measured for children, particularly regarding positive functioning or health potential for children, family, or parenting processes, neighborhood and community influences, and aspects of health care quality. Moreover, with the exception of preventive care, there is almost no attempt to tailor measures to appropriate age groups or make them age-specific.
While recurrent surveys such as NHIS are well established and structured to routinely collect standard information about child health, their established nature makes them somewhat resistant to change other than through special supplements. The NHANES is, perhaps, one exception because it already collects biological samples from children, and these could be used to easily screen for additional biomarkers. Despite these gaps in measurement, a number of one-time surveys have successfully collected data on measures at the forefront of children’s health issues. Collection of these data not only demonstrates that these issues can be successfully measured, but also serves as a testing ground for the validity and reliability of the measures, easing their transition into other ongoing national surveys.
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TABLES B-1 THROUGH B-4 FOLLOW
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TABLE B-1 Descriptive Characteristics of 12 National Surveys of Children’s Health
Descriptive Characteristics
NHIS
NHANES
MEPSa
YRBS
NLSYb
Add Health
Year
2002
1994–2004
2002
2003
1997
2001–2002
Origination
1957
1971
1996
1991
1997
1994–1995
Sponsor(s)
NCHS/ CDC
NCHS/ CDC
AHRQ
NCHS/ CDC
DOL
NICHD
Frequency
Annual
Annual since 1999
Annual
2 years
Various
3 waves, 1 and 6 years
Design
CS
CS
CS panels
CS
L
L
Sample size
N = 12,524; 26,191 children in person file
N = 5085 <20 years, 4,880 adults
N = 11,500 children/ year
N = 13,000 adolescents
N = 8,984 adolescents
N = 20,745 adolescents
Age group
All ages
All ages
<18 years
14–17 years
12–16 years
<18 years
Respondent
Adult
Adult
Household respondent
Adolescent
Adolescent and adult
Adolescent and adult
NHIS = National Health Interview Survey; NHANES = National Health and Nutrition Examination Survey; MEPS = Medical Expenditure Panel Survey; YRBS = Youth Risk Behavior Survey; NLSY = National Longitudinal Survey of Youth; Add Health = National Longitudinal Survey of Adolescent Health; NSFH = National Survey of Families and Households; ECLS-K = Early Childhood Longitudinal Study Kindergarten Class; ECLS-B = Early Childhood Longitudinal Study-Birth Cohort; NHES = National Household Education Surveys; NSECH = National Survey of Early Childhood Health; NSCSHCN = National Survey of Children with Special Health Care Needs
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NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
2001–2002
2002
2001
2003
2000
2000–2002
1987–1988
1998–1999
2001
1991
2000
2000–2002
NICHD/ NIA
NCES
NCES
NCES
CDC/AAP
MCHB
3 waves: 5 and 8 years
Fall and Spring K and 1st. Spring 3rd and 5th.
5 waves: 9 months to 6 years
Approx. every 2 years
One time
One time
L
L
L
CS
CS
CS
N = 2,500 children
N = 22,000 children
N = 10,700 children
Varies: N = 7,000–
N = 2,068 children
N = 37,500 children
22,000
<18 years
5–10 years
9 months to 6 years
Varies: but always includes <18 years
4–35 months
<18 years
Child and adult
Adult, child, school records
Adult, child, child care provider, observation, and birth certificate
Adult and adolescent
Adult
Adult
CS = Cross-sectional study design
L = Longitudinal study design
aPrior to 1996, the MEPS was conducted in 1977 and 1987.
bThe NSLY was started in 1979 with an original cohort of 12,686 children ages 14–22 that was interviewed annually until 1994. In this review, we focus only on a more recent and separate NSLY cohort study that began in 1997.
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TABLE B-2 Child Health Condition Categories (by ICD9 Code) with Selected Highlights
ICD9 Code
Health Conditions, Disorders, or Diseases
NHIS
NHANES
MEPS
001–139
Infectious and parasitic diseases
●
○●●
●
042: AIDS
○
079: Syphilis
○●
055: Measles
○
140–239
Neoplasms
●●
●
240–279
Endocrine, nutritional, metabolic
●
250: Diabetes mellitus
●
○●●
●
280–289
Blood and blood-forming organs
●
●
●
280: Iron-deficiency anemia
●
○●
984: Lead poisoning
○●
290–319
Mental disorders
●●
●●
●●
300: Depression
●●
●
314: ADD/ADHD
●
●●
●
315: Mental retardation
●
●
320–389
Nervous system & sense organs
●●
●
390–459
Circulatory system
●
●
460–519
Respiratory system
●●
●●
●
493: Asthma
●●
●●
●
520–579
Digestive system
●
●
●
521: Oral health (cavities, etc)
○
●
580–629
Genitourinary system
630–676
Pregnancy, childbirth, puerperium
○●
●
635: Abortion
680–709
Skin and subcutaneous tissue
●
○●●
●
710–739
Musculoskeletal/connective tissue
●
●
740–759
Congenital abnormalities
●
●
760–779
Conditions in perinatal period
765: Low birthweight
●
●
765: Very low birthweight
●
●
780–799
Symptoms/ill-defined conditions
●
●
800–999
Injury and poisoning
●
●
995: Child abuse
V01–V82
Supplemental influences on health
V22: Pregnancy
●
E800–E999
Supplemental injury, poisoning
●
E950–959: Suicide
Chronic condition (general measure)
NHIS = National Health Interview Survey; NHANES = National Health and Nutrition Examination Survey; MEPS = Medical Expenditure Panel Survey; YRBS = Youth Risk Behavior Survey; NLSY = National Longitudinal Survey of Youth; Add Health = National Longitudinal Survey of Adolescent Health; NSFH = National Survey of Families and Households; ECLS-K = Early Childhood Longitudinal Study Kindergarten Class; ECLS-B = Early Childhood Longitudinal Study-Birth Cohort; NHES = National Household Education Surveys; NSECH = National Survey of Early Childhood Health; NSCSHCN = National Survey of Children with Special Health Care Needs
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YRBS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
●
●
●○
●
●
●
●
●
●
●
●
●
●
●
●●
●
●
●
●●
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bc
●
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bc
●
bc
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bc
●
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bc
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●
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●● Construct is measured “comprehensively” (i.e., at least 3–4 questions used to gather information on a topic).
● Construct is measured “adequately” (i.e., only 1–2 questions used to gather information on a topic).
○ Construct is measured through a biological or physical mechanism (e.g., withdrawal of a blood sample or physical exam).
bc Construct is measured using data from birth certificates.
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TABLE B-3 Child Health Status, Functioning, and Health Potential Measures
Health Measures
NHIS
NHANES
MEPS
I. Functioning
A. Physical functioning
1. Diseases
●
○●
●
2. Injuries
●
●
3. Impairments
Limitations in mobility
●
●
●
Impairments needing wheelchair, etc.
●
●
●
Gross and fine motor deficits
●
Hearing difficulty, deafness
●
●●
Vision difficulty, blindness
●●
○●
●●
Speech difficulty
●
Delays in growth or development
Measurement of height
●
●
●
Measurement of weight
●
●●
●●
Restriction of usual activities
●●
●●
●●
Limitations due to oral health
●
4. Symptoms
B. Psychological functioning
1. Cognitive functioning
Alertness problems
Confusion problems
●●
Inattentiveness
●
Concentration difficulty
●
Problem-solving deficits
Language use/comprehension deficits
Reading difficulty
Learning disability
●
●●
●
2. Emotional functioning
Limitations in usual activities
●
●
Attachment problems
Negative affect, mood, or depression
●
●●
Consideration of suicide
Infant temperament
Temperament problems
●
●
Anxious, nervous, or worrisome
●
●
Trouble with self-regulation
Poor self-esteem and self-perception
Negative body image
Self-sufficiency problems
Difficulty getting to sleep
●
C. Social functioning
Relational capacity deficits
●
●
Cooperation problems
●
Poor integration or connection
Conduct/delinquency problems
●●
Poor academic performance
School days missed
●
●
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YRBS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
○
●
○
○
○
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Health Measures
NHIS
NHANES
MEPS
2. Socioeconomic status
Family income
●●
●●
●●
Difficulty paying for basic needs
●
Receipt of TANF
●●
●●
Receipt of SSI
●●
●
Receipt of WIC
●
●
Rental assistance/public housing
Food insecurity
●●
●●
Receipt of food stamps
●
●
Participation in early intervention
●
●●
Special education
●●
●
Individualized education program
Free or reduced price lunch
●●
Maternal/paternal education
●●
●
●●
Maternal/paternal employment
●●
●●
●●
4. Parent health, mental health, substance use
Parent health
●●
●●
Parent/partner support or arguing
Maternal depression
●
●
Maternal frustration
Maternal stress
Parent social support
Parent concerns about child health
Parent exercise behaviors
●●
●
Parent smoking
●●
●●
●
Parent alcohol and drug use
●●
●●
5. Pregnancy issues
Whether the pregnancy was wanted
Receipt of prenatal care
Prepregnancy weight
Supplement use during pregnancy
Use of fertility treatments
6. Parenting
Paternal involvement/closeness
Breastfeeding
●●
Routines for sleeping, feeding
Childrearing belief (age to toilet train)
Parenting style (authoritarian, etc.)
Time spent with children
Monitoring and supervision
Supportive nature
Discipline
Use of child care
●
7. Family learning environments
Home schooling
●
Reading to children
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YRBS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
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Health Measures
NHIS
NHANES
MEPS
Socialization and play
Participation in school activities
Providing learning opportunities
Assisting with homework/projects
Use of after school programs
Availability of a computer at home
8. Family provision of safe environments
●(periodic)
Car seats and seat belts
Use of smoke detectors
Reduce hot water temperature
Cabinet locks or safety latches
Covering electrical sockets
Baby gates and other barriers
Water safety supervision
Have syrup of Ipecac
Safe storage of firearms
B. Community
1. Neighborhood demographics and SES
Geographic setting (e.g., rural)
Community socioeconomic level
Unemployment rates
Relative income distribution
Affordable housing
2. Neighborhood institutions
Preschool availability and use
●
Head Start availability and use
●
Schools and class size
Social (e.g., library/community centers)
Child care programs
Police protection
3. Social organization of neighborhood
Social cohesion (trust and values)
Social control (monitoring)
Social connection (e.g., to school)
Social interaction and networks
C. Culture
Race/ethnicity
●●
●
●●
English-language proficiency
●●
●
Culture, beliefs, practices
Citizenship or immigration status
●
●
●
Acculturation
●
●●
●
D. Discrimination
Diversity and segregation
Racism, classicism, etc.
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YRBS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
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Health Measures
NHIS
NHANES
MEPS
IV. Physical environment
A. Micro-environment
1. Prenatal exposures
Nonconcurrent exposures
Concurrent exposures (e.g., smoking)
●
2. Postnatal exposures
Air pollutants
●●
Water pollutants
Food contaminants
Infectious agents
○
Chemicals (e.g., lead) and pesticides
○●●
Noise
Radiation (UV and Ionizing)
B. Macro-environment
1. Physical exposures
Noise and unwanted sound
Environmental air pollution/ozone
2. Physical safety and security
Housing adequacy
●●
Housing safety (e.g., lead paint)
●(periodic)
●●
School safety (e.g., playground)
Recreational safety (e.g., parks)
Pedestrian safety (e.g., crosswalks)
Vehicle accidents (e.g., car, bike)
Community/school safety (violence)
V. Services (health services)
A. Structure
1. Health insurance coverage and type
●●
●●
●●
Public vs. private sponsorship
●●
●●
●●
Comprehensiveness of benefits
●
Cost-sharing requirements
●●
●●
Gaps in coverage
●
●
●●
2. Managed care plan restrictions
Gatekeeping restrictions
●●
●●
●●
Network restrictions
●●
●●
●●
Provider incentives
3. Regular source/provider of care
●
●
●
Specialty and training
●
●
Demographics (gender, race, or age)
●●
Language
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4. Setting of care
Clinic vs. private office
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Health center (e.g., CHC)
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Staffing and resources
Geographic location
Service capacity
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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
YRBpS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
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Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
Health Measures
NHIS
NHANES
MEPS
B. Process of care
1. Accessibility
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Waiting time for/at appointment
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Distance/transportation to office
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Phone contact with provider
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Delayed or missed care/prescriptions
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Difficulty obtaining referrals
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2. Continuity of crare
Same provider for sick and well care
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Same provider seen regularly
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Length of time with same provider
3. Interpersonal manner
Duration of medical visit
Enough time to ask questions
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Provider listens/answers questions
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Support and partnership in care
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4. Comprehensiveness of services
Developmental assessment
Use of reminders for immunizations
Anticipatory guidance
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Injury prevention guidance
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Psychosocial counseling
Lead poisoning screening
Reproductive counseling/screening
5. Coordination of care
Need for coordination
Type of care coordinator
Actions of the provider/coordinator
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Communication among providers
Communication with school/teacher
Receipt of Title V services
6. Family-centered care
7. Cultural competence
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C. Utilization/receipt of care
1. Primary care
Well-child/routine checkup visits
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Physician visits
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Vision visits
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Dental visits
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Prescription medication (use)
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2. Up-to-date immunization schedule
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Hepatitis A
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Hepatitis B
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DTP (diphtheria, tetanus, pertussis)
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MMR (measles, mumps, rubella)
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IPV (inactivated polio)
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OCR for page 285
Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
YRBS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
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OCR for page 286
Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
Health Measures
NHIS
NHANES
MEPS
Hib (Haemophilus influenzae)
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Varicella
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Influenza
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Pneumococcal
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3. Specialty and tertiary care
Specialist visits
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Mental health visits
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Receipt of special therapy
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Hospitalization admission
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Emergency department visit
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Surgical procedures
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Home care from professional
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NHIS = National Health Interview Survey; NHANES = National Health and Nutrition Examination Survey; MEPS = Medical Expenditure Panel Survey; YRBS = Youth Risk Behavior Survey; NLSY = National Longitudinal Survey of Youth; Add Health = National Longitudinal Survey of Adolescent Health; NSFH = National Survey of Families and Households; ECLS-K = Early Childhood Longitudinal Study Kindergarten Class; ECLS-B = Early Childhood Longitudinal Study-Birth Cohort; NHES = National Household Education Surveys; NSECH = National Survey of Early Childhood Health; NSCSHCN = National Survey of Children with Special Health Care Needs
OCR for page 287
Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
YRBS
NLSY
Add Health
NSFH
ECLS-K
ECLS-B
NHES
NSECH
NS-CSHCN
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●● Construct is measured “comprehensively” (i.e., at least 3–4 questions used to gather information on a topic).
● Construct is measured “adequately” (i.e., only 1–2 questions used to gather information on a topic).
○ Construct is measured through a biological or physical mechanism (e.g., withdrawal of a blood sample or physical exam).
bc Construct is measured using data from birth certificates.
Representative terms from entire chapter:
child health
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