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

Chapter: Appendix F: Population Health Data

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Suggested Citation:"Appendix F: Population Health Data." 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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Population Health Data

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Suggested Citation:"Appendix F: Population Health Data." 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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Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
American Indian and Alaska Native Linked Birth/Infant Death Record Database 1999 1983 Indian Health Service Indian Health Service Annual
 
Childhood Blood Lead Surveillance 2006 1995 CDC CDC Annual
 
Congenital Syphilis (CS) Cases Investigation and Report   1983 CDC CDC Annual
 
Consumer Assessment of Healthcare Providers and Systems 2007 1995 AHRQ AHRQ  
 
Current Population Survey 2010   Bureau of Labor and Statistics U.S. Census Bureau Monthly
 
Decennial Census 2000 1790 U.S. Census Bureau U.S. Census Bureau Every 10 years
 
Early Childhood Longitudinal Survey—Birth Cohort 2001 2001 NCES NCES 5 waves; 9 months to 6 years
 
Early Childhood Longitudinal Survey—Kindergarten Cohort 2002 1998–1999 NCES; ACYF; ERS; OSEP; Policy and Programs Studies Services, U.S. Department of Education; NCSER NCES Fall and Spring K and 1st grade; Spring 3rd and 5th grade
Page 275 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
      Birth and death records http://aspe.hhs.gov/datacncl/DataDir/ihs.htm#aial
 
Cross-sectional N = 23,485,435 children <72 months Laboratory reports http://www.cdc.gov/nceh/lead/data/index.htm
 
Cross-sectional     Reports http://aspe.hhs.gov/datacncl/DataDir/cdc1.htm#cscir
 
Cross-sectional   All ages Adult https://www.cahps.ahrq.gov/default.asp
 
Cross-sectional N = 50,000 households >16 years Household respondent http://www.census.gov/cps/
 
Cross-sectional N = 281,421,906 All ages Household respondent http://factfinder.census.gov/jsp/saff/SAFFInfo.jsp?_pageId=sp4_decennial
 
Longitudinal N = 14,000 children 9 months to 6 years Adult, child, child care provider, observation, and birth certificate http://nces.ed.gov/ECLS/Birth.asp
 
Longitudinal N = 22,000 children 5–10 years Adult, child, school records http://nces.ed.gov/ecls/kindergarten2010.asp
Page 276 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
Global Youth Tobacco Survey 2000 1999 CDC Canadian Public Health Association; National Cancer Institute; United Nations Children Emergency Fund; WHO Annual
 
Great Smoky Mountains Study 2003 1992 NIMH Duke University and the North Carolina State Division of Developmental Disabilities, Mental Health, and Substance Abuse Services 3 waves; 9, 11, and 13 years
 
Head Start Family and Child Experiences Survey 2006 1997 ACF/OPRE; Head Start Bureau Mathematica Policy Research, Inc. Four cohorts
 
Head Start Program Information Report 2008   ACF/DHHS ACF/DHHS Annual
 
Hispanic Health and Nutrition Examination Survey, 1982–1984 1984 1982 NCHS/CDC NCHS/CDC One time
Page 277 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
Cross-sectional N = 35,828 13–15 years Adolescents http://www.cdc.gov/tobacco/global/gyts/index.htm
 
Longitudinal N = 1,073 children 9–16 years Child and adult http://devepi.duhs.duke.edu/gsms.html
 
Longitudinal N = 3,500 children 3–4 years Adult http://www.acf.hhs.gov/programs/opre/hs/faces/faces_overview.html
 
Cross-sectional   All ages Adult http://eclkc.ohs.acf.hhs.gov/hslc/Program%20Design%20and%20Management/Head%20Start%20Requirements/Progam%20Information%20Report
 
Cross-sectional N = 16,000 6 months–74 years Adult http://www.cdc.gov/nchs/nhanes/hhanes.htm
Page 278 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
Kids’ Inpatient Database 2006 1997 AHRQ AHRQ Every 3 years
 
Linked Birth and Infant Death Data 2005 1995 CDC CDC Annual
 
Medical Expenditure Panel Survey 2002 1996 AHRQ AHRQ Annual
 
Metropolitan Atlanta Congenital Defects Program 2004 1967 CDC CDC Annual
 
Monitoring the Future 2009 1975 NIDA; Survey Research Center Survey Research Center, Institute for Social Research, University of Michigan Annual
 
National Child Abuse and Neglect Data System 2007 1990 Children’s Bureau, U.S. Department of Health and Human Services Children’s Bureau, U.S. Department of Health and Human Services Annual
 
National Asthma Survey 2003 2003 NCHS/CDC NCHS/CDC One time
 
National Comorbidity Survey-Adolescent (NCS-A) 2001 2001 NIMH/NIH NIMH/NIH One time
Page 279 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
Cross-sectional N = 3,131,324 pediatric discharges <20 years Records http://www.hcup-us.ahrq.gov/kidoverview.jsp
 
Cross-sectional N = 4,138,573 live births   Birth certificate and death certificate http://www.cdc.gov/nchs/linked.htm
 
Cross-sectional panels N = 11,500 children/year <18 years Household respondent http://www.meps.ahrq.gov/mepsweb/
 
Cross-sectional N = 51,676 live births 0–6 years Records http://www.cdc.gov/ncbddd/bd/macdp.htm
 
Cross-sectional N = 50,000 8th, 10th, and 12th graders 12–45 years Adolescent and young adult http://www.monitoringthefuture.org/
 
  College students and young adults      
 
Cross-sectional N = 794,000 children victims of child maltreatment >3.5 million children received CPS assessments or investigations <18 years State records http://www.acf.hhs.gov/programs/cb/systems/index.htm#ncands
 
  N = 955 in national study; N = 5,741 in four-state study All ages Adult http://www.cdc.gov/nchs/slaits/nas.htm
 
    13–17 years Adolescent http://www.hcp.med.harvard.edu/ncs/instruments.php
Page 280 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
National Electronic Disease Surveillance Systems 2004 1993 CDC CDC Annual
 
National Health and Nutrition Examination Survey 1994–2004 1971 NCHS/CDC CDC Annual since 1999
 
National Health Care Survey 2007 1965 NCHS/CDC CDC  
 
National Health Interview Survey 2002 1957 NCHS/CDC CDC Annual
 
National Household Education Surveys Program 2007 1991 NCES NCES Approx. every 2 years
 
National Immunization Provider Record Check Study 1999 1994 NCHS/CDC NCHS/CDC  
 
National Immunization Survey 2008 1995 NCIRD/NCHS, CDC National Opinion Research Center, University of Chicago Annual
Page 281 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
Cross-sectional Varies All ages Medical case report forms http://www.cdc.gov/NEDSS/index.htm
 
Cross-sectional N = 5085 <20 years, 4,880 adults All ages Adult http://www.cdc.gov/nchs/nhanes.htm
 
Cross-sectional   All ages Health care provider http://www.cdc.gov/nchs/nhcs.htm
 
Cross-sectional N = 12,524; 26,191 children in person file All ages Adult http://www.cdc.gov/nchs/nhis.htm
 
Cross-sectional Varies: N = 7,000 Varies but always includes <18 years Adult and adolescent http://nces.ed.gov/nhes/
 
    12–35 months Provider http://www.cdc.gov/nchs/nhis/niprcs/niprcs.htm
 
Cross-sectional   All ages Adult, doctors and other vaccination providers http://www.cdc.gov/NIS/
Page 282 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
National Longitudinal Survey of Adolescent Health (also known as Add Health) 2007–2008 1994–1995 NICHD Carolina Population Center 4 waves; 1, 7, and 13 year follow-up
 
National Longitudinal Survey of Youth 1997 1997 1997 DOL Bureau of Labor Statistics Various
 
National Maternal and Infant Health Survey 1988 1988 1988 NCHS/CDC NCHS/CDC One time
 
National Maternal and Infant Health Survey 1991 Longitudinal Follow up to 1988 1991 1988 NCHS/CDC NCHS/CDC 3 years
 
National Mortality Data 2006 1989 NCHC/CDC CDC Annual
 
National Mortality Followback Survey 1993 1961 NCHC/CDC CDC Annual
 
National Survey of American Life 2003 2001 NIMH/NIH Program for Research on Black Americans, Institute for Social Research, University of Michigan  
Page 283 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
Longitudinal N = 20,745 adolescents (Wave 1); N = 14,738 adolescents (Wave 2); N = 15,197 young adults (Wave 3); N = 15701 adults (Wave 4) Grades 7–12; young adults 18–26; adults 24–32 Adolescent and adult http://www.cpc.unc.edu/projects/addhealth
 
Longitudinal N = 8,984 adolescents 12–16 years Adolescent and adult http://www.bls.gov/nls/nlsy97.htm
 
Cross-sectional N = 18,594   Adult, birth and death certificates, and reports of fetal death http://www.cdc.gov/nchs/products/elec_prods/subject/mihs.htm
 
Longitudinal N = 2,000 women   Adult http://www.cdc.gov/nchs/products/elec_prods/subject/lfnmihs.htm
 
Cross-sectional N = 2,426,264 All ages Death certificates http://www.cdc.gov/nchs/deaths.htm
 
Cross-sectional N = 9,636 >15 years Death certificates http://www.cdc.gov/nchs/nvss/nmfs.htm
 
  N = 1,170 adolescents 13–17 years Adolescent and adult http://www.rcgd.isr.umich.edu/prba/nsal
Page 284 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
National Survey of America’s Families 2002 1997 Urban Insitute Urban Institute 3 series; 1997, 1999, and 2002
 
National Survey of Children with Special Health Care Needs 2005–2006 2000–2001 MCHB NCHS/CDC Varies
 
National Survey of Children’s Health 2007–2008 2003–2004 MCHB NCHS/CDC Varies
 
National Survey of Early Childhood Health 2000 2000 AAP/MCHB NCHS/CDC One time
 
National Survey of Families and Households 2001–2003 1987–1988 NICHD/NIA University of Wisconsin Survey Center 3 waves; 5 and 8 years
 
National Survey of Family Growth 2006–2009 1973 NCHS/CDC NCHS/CDC 7 cycles
 
National Survey on Drug Use and Health (formerly National Household Survey on Drug Abuse) 2008 1972 SAMHSA OAS/SAMHSA Annual since 1991
 
NHLBI Growth and Health Study (NGHS) 2000 1985 NHLBI/NIH NHLBI/NIH Annual
 
Pediatric Nutrition Surveillance System 2007 1973 CDC CDC Annual
Page 285 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
Cross-sectional N = 43,157 households All ages Adult http://www.urban.org/center/anf/nsaf.cfm
 
Cross-sectional N = 40,804 <18 years Adult http://cshcndata.org/Content/Default.aspx
 
Cross-sectional N = 91,642 children <18 years Child and adult http://www.cdc.gov/nchs/slaits/nsch.htm
 
Cross-sectional N = 2,068 children 4–35 months Adult http://www.cdc.gov/nchs/slaits/nsech.htm
 
Longitudinal N = 2,500 children <18 years Child and adult http://www.ssc.wisc.edu/nsfh/
 
Cross-sectional N = +16,000 All ages Adolescent and adult http://www.cdc.gov/nchs/NSFG.htm
 
Cross-sectional N = 68,736 >12 years Adolescent and adult http://www.oas.samhsa.gov/nhsda.htm
 
Longitudinal N = 2,379 girls 9–19 years Adolescents https://biolincc.nhlbi.nih.gov/studies/nghs/
 
Cross-sectional 8,164,612 children Birth–5 years Records http://www.cdc.gov/PEDNSS/index.htm
Page 286 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Data Source">Data Source Year Origination Sponsoring Agency Data Collection Organization Frequency
Pediatric Spectrum of HIV Disease   1988 CDC CDC Every 6 months
 
Pregnancy Risk Assessment Monitoring System 2009 1987 CDC CDC/State health departments 6 phases
 
Runaway and Homeless Youth Management Information System 1998 1989 ACF/DHHS ACF/DHHS Annual
 
SCHIP Evaluation 2000 2000 ASPE Mathematica Policy Research, Inc. One time
 
Study of Early Child Care and Youth Development 2006 1991 NICHD NICHD/NIH 4 phases
 
Young Men’s Survey 2000 1994 CDC CDC Varies
 
Youth Risk Behavior Surveillance System 2007 1991 NCHS/CDC CDC 2 years

NOTE: AAP = American Academy of Pediatrics; ACF = Administration for Children and Families; ACYF = Administration on Children, Youth and Families; AHRQ = Agency for Healthcare Research and Quality; ASPE = The Assistant Secretary for Planning and Evaluation; CDC = Centers for Disease Control and Prevention; CPS = Child Protective Services; DHHS = U.S. Department of Health and Human Services (now HHS); DOL = U.S. Department of Labor; ERS = Economic Research Service; MCHB = Maternal and Child Health Bureau; NCES = National Center for Education Statistics; NCHC = National Coalition on Health Care; NCHS = National Center for Health Statistics; NCIRD = National Center for

Page 287 Cite
Suggested Citation:"Appendix F: Population Health Data." 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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Design Sample Size Age Group Respondent Web Link
  >17,000 children   Medical records http://aspe.hhs.gov/datacncl/DataDir/cdc1.htm#psd
 
Cross-sectional     Adult http://www.cdc.gov/prams/
 
Cross-sectional N = 11,308 youth <18 years Agencies http://www.acf.hhs.gov/programs/fysb/content/youthdivision/resources/rhymsfactsheet.htm
 
Cross-sectional N = 9,850 All ages Adult http://aspe.hhs.gov/health/schip/background.htm
 
Cross-sectional N = 1,073 children Age 0–9th grade Child and adult http://www.nichd.nih.gov/research/supported/seccyd.cfm
 
Cross-sectional N = 3,449 young men 15–22 years Adolescent and young adult http://aspe.hhs.gov/datacncl/DataDir/cdc1.htm#yms
 
Cross-sectional N = 14,041 adolescents 14–17 years Adolescent http://www.cdc.gov/HealthyYouth/yrbs/index.htm

Immunization and Respiratory Diseases; NCSER = National Center for Special Education Research; NHLBI = National Heart, Lung, and Blood Institute; NIA = National Institute on Aging; NICHD = National Institute of Child Health and Human Development; NIDA = National Institute on Drug Abuse; NIH = National Institutes of Health; NIMH = National Institutes of Mental Health; OAS = Office of Applied Studies; OPRE = Office of Planning, Research and Evaluation; OSEP = Office of Special Education Programs; SAMHSA = Substance Abuse and Mental Health Services Administration; WHO = World Health Organization.

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Suggested Citation:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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:"Appendix F: Population Health Data." 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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