An Overview of Child and Adolescent Health Datasets and Data Use: NSCH & NS-CSHCN

1. An Overview of Child and Adolescent Health Datasets and Data Use:NSCH & NS-CSHCN Laurin Kasehagen, MA, PhD MCH Epidemiologist / CDC Assignee to CityMatCH Maternal & Child Health Epidemiology Program Applied Sciences Branch, Division of Reproductive Health National Center for Chronic Disease Prevention & Health Promotion Slides courtesy of CAHMI

2. Slides courtesy of CAHMI Learning Objectives • Identify national, regional, state, and local level child health data available through the NSCH and NS-CSHCN • Determine the relevance of these data to your community needs • Understand the limitations and strengths of these data • Use online resources to access findings from and learn about data applications of the NSCH and NS-CSHCN

3. Slides courtesy of CAHMI Presentation Outline • Overview and background of surveys • National Survey of Children’s Health (NSCH) • National Survey of Children with Special Health Care Needs (NS-CSHCN) • Overview of SLAITS • Methodology • Sampling • Questionnaires • Examples of data use • Practical exercises using the data

4. Slides courtesy of CAHMI NSCH and NS-CSHCN Overview and Background • Sponsored by the HRSA / Maternal and Child Health Bureau • Use SLAITS (State and Local Area Integrated Telephone Survey) sampling mechanism • National Center for Health Statistics oversees sampling and administration • Designed and collected in a manner that allows valid state-to-state, regional, and national comparisons • Weighted data yield prevalence estimates for non-institutionalized child populations aged 0-17 in each state and nationally

5. Slides courtesy of CAHMI What is SLAITS? • Uses the National Immunization Survey (NIS) sampling frame • Screens for households with children but only samples those with children aged 19-35 months • Random digit dial telephone design • Standardized questions produce comparative data across states and the nation • Accommodates modules of customized questions and specific domains of interest • Estimates are adjusted for non-coverage of households without telephones

6. Slides courtesy of CAHMI Survey Design Flowchart NIS advance letter Phone call with NIS introduction 1+ NIS interview “How many children 12 months to 3 years in the household”? SLAITS introduction and informed consent “How many people <18 years old in the household”? SLAITS screening and interview 1+ NONE “Those are all the questions I have. I’d like to thank you . . . .”

7. Slides courtesy of CAHMI

8. Slides courtesy of CAHMI National Survey of Children’s Health (NSCH) • Description • State, regional, and national representation • Non-institutionalized children aged 0-17 years • Focuses on children’s health and well-being • Data collection years: 2003, 2007, 2011 • Sample size • 2003: n=102,353, n=1483-2241 per state • 2007: n= 91,642, n= 1725-1932 per state • 2011: estimated n=91,800, n=1800 per state

9. Slides courtesy of CAHMI NSCH Interview Information • Over 100 indicators of child health and well-being • Health status – physical, dental, emotional • Health care, including medical home • School and extracurricular activities • Family • Neighborhood • Early childhood measures (0-5 years) • School-age measures (6-17 years)

10. Slides courtesy of CAHMI National Survey of Children with Special Health Care Needs (NS-CSHCN) • Description • State, regional, and national representation • Non-institutionalized children aged 0-17 years who meet criteria for having a special health care need • Focuses on health services need, use and performance • Data collection years: 2001, 2005-6, 2009-10 • Sample size • 2001: n=38,866, n~750 per state • 2005-6: n=40,840, n~800 per state • 2009-10: n=36,800, n~736 per state

11. Slides courtesy of CAHMI Definition of CSHCN • Uses the 1998 MCHB definition as a starting point for identification • “Children with special health care needs . . . a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

12. Slides courtesy of CAHMI CSHCN Screener • Limited or prevented in ability to function • Prescription medication need / use • Specialized therapies, e.g. OT, PT, speech • Above routine use of medical care, mental health, or other health services • Counseling or treatment for on-going emotional, behavioral, or developmental problem • Due to medical, behavioral, or other health condition, AND • Has lasted or is expected to last for at least 12 months

13. Slides courtesy of CAHMI CSHCN Screener Example • Is [child’s name] limited or prevented in any way in his/her ability to do the things that most children of the same age can do? (If YES, then . . .) • Is [child’s name] limitation in abilities because of ANY medical, behavioral, or other health condition? (If YES, then . . .) • Is this a condition that has lasted or is it expected to last for at least 12 months? • NOTE: All 3 parts of the question must be answered YES for a child to qualify on the functional limitations consequences criteria

14. Slides courtesy of CAHMI CSHCN Interview Information • Health and functional status • Health insurance status and adequacy of coverage • Access to health care (needed services and unmet needs) • Care coordination • Impact of child’s health on family • MCHB core outcomes for CYSHCN • Key indicators of CSHCN health and system performance

15. Slides courtesy of CAHMI CSHCN Conditions • Asthma / allergies • ADHD / ADD • Depression, anxiety, etc. • Diabetes • Migraine / frequent headaches • Heart problems, congenital heart disease • Blood disorders • Arthritis / joint problems • Epilepsy or seizures • Cerebral palsy • Cystic fibrosis • Muscular dystrophy • Austim / ASD • Down Syndrome • Mental retardation • Developmental delay

16. Slides courtesy of CAHMI CSHCN Functional Difficulties • Difficulty seeing even with glasses / contacts • Use of hearing aids • Difficulty hearing even with aids • Respiratory problems • Swallowing / digesting • Blood circulation • Chronic Paid • Self-care • Gross motor control • Fine motor control • Speaking / communicating • Learning / paying attention • Anxiety / depression • Behavioral / conduct problems • Making and keeping friends

17. Slides courtesy of CAHMI Differences between NSCH & NS-CSHCN NSCH NS-CSHCN • Population: all children 0-17 years • Identification of interview subject: random selection of 1 child in each household, then CSHCN screening questions are asked • Topic areas: child health and well-being, plus family and neighborhood information • CSHCN sample size: 300 per state • Population: CSHCN 0-17 years • Identification of interview subject: random selection of CSHCN after screening all children in household • Topic areas: CSHCN-specific health and well-being, plus provider and system level information • CSHCN sample size: 750-800 per state

18. Slides courtesy of CAHMI Limitations of NSCH and NS-CSHCN • Limited to sub-state analyses • No county level estimates • Cross-sectional • Point-in-time data, every 4 years • Parental reports • 12-month recall frame • Telephone survey data • Subject to non-response, non-coverage, other biases • Revisions, changes to survey content prevent trending of some content across survey years

19. Slides courtesy of CAHMI NSCH and NS-CSHCN • Data linkages • To zipcode (not county) with NCHS RDC approval • Technical requirements • Statistical software like SAS, SUDAAN, STATA that can handle analyses of weighted complex survey data • Availability / cost of data • Online on the Data Resource Center website and the NCHS website • Free!

20. Slides courtesy of CAHMI CAHMI DRC Resources • DRC indicator datasets available at no cost from CAHMI • SAS and SPSS formatted data • Includes all DRC child health indicator variables • Requires a Data Use Agreement with CAHMI -- cahmi@ohsu.edu • SAS and SPSS codebooks with programming code used to construct child health indicators

21. Slides courtesy of CAHMI Key Considerations in Analyzing NSCH and NS-CSHCN Data • Denominator is always CHILDREN • To calculate prevalence, use correct weighting variable • Use analytic software that adjusts variances for complex survey designs • Be aware of responses like ‘don’t know’ and ‘refuse’

22. Slides courtesy of CAHMI Why might the findings on the same variable differ between the NSCH and the NS-CSHCN? • Dates of data collection • Method of data collection and estimation • Mode • Sampling frame • Interviewers • Weighting methods • Sample size and sampling error • Method of identification • Respondent • Recall period • Question wording • Question ordering • Question context and introduction

23. Slides courtesy of CAHMI 5 Key Starter Questions • What is the unit of analysis you are interested in? • What source of data is most suitable to your question? • What key topics are you interested in studying? • What sample size is required to make your analysis possible and meaningful? • Can you meet the technical requirements for using the dataset of interest?

24. Slides courtesy of CAHMI Practical Exercise • Using information from any of the on-line data sources, create a ‘fact sheet’ or a ‘poster’ using one of the templates provided • Address a topic that is of interest in your community • Try to use at least one of the child health data sets and at least one adult health data set • Try to address • Background • Importance • Objectives • Methods (if you can) • Results • Limitations • Conclusions • Implications

25. Slides courtesy of CAHMI Vocabulary • n • N • Weighted estimate • Prevalence • 95% Confidence Interval

26. Slides courtesy of CAHMI ‘n’ versus ‘N’ – there is a difference! • n = actual number of people in the sample with a specific characteristic or response to a survey question BEFORE weighting to reflect population of the sampled area • N=

27. Slides courtesy of CAHMI Weighted estimate • Estimated number or % of people with the characteristic or response of interest after adjusting (weighting) to represent total population in the sampled area

28. Slides courtesy of CAHMI Prevalence

29. Slides courtesy of CAHMI 95% Confidence Interval • “Margin of Error” -- the statistical price you pay for not interviewing EVERYONE! • Provides information about the precision of the prevalence estimate • Width of CI influenced by sample size • Generally: the larger the sample, the smaller width of the CI and the more precise the prevalence estimate

30. Slides courtesy of CAHMI Acknowledgements • Christina Bethell, PhD, MPH, MBA - The Child and Adolescent Health Measurement Initiative (CAHMI)

31. Slides courtesy of CAHMI About CAHMI • The Child and Adolescent Health Measurement Initiative (CAHMI) is a national, not-for-profit initiative based out of Oregon Health and Science University, Department of Pediatrics in Portland, Oregon, established in 1998 • CAHMI Mission: • “To ensure that children, youth and families are at the center of quality measurement and improvement efforts in order to advance high quality consumer-centered health care.”

32. Slides courtesy of CAHMI How CAHMI Achieves its Mission - 1 • The CAHMI keeps the focus on consumer-centered health care • Articulates and advances a consumer-centered quality framework • Participates in national committees & advisory boards • Provides assistance in the development of consumer-centered strategies • The CAHMI builds the supply for consumer-centered measurement strategies • Developing reliable, valid, and consumer-centered measures of health and health care quality • Identifying and facilitating the filling of gaps in current measures • Provides technical assistance and benchmarking databases for quality measures

33. Slides courtesy of CAHMI How CAHMI Achieves its Mission - 2 • The CAHMI builds the demand for consumer-centered measurement and improvement • Advances strategies for putting data into action • Designs, tests, and demonstrates the impact of consumer-centered tools in practice • Creates and evaluates patient-centered strategies to improve health systems

34. Slides courtesy of CAHMI Data Resource Center Goals • Provide a high-quality, publicly accessible and easy to use web-based resource that allows for tailored and interactive state and population subgroup level data searches • Eliminate barriers faced by policy, program, provider, and advocacy audiences in obtaining information in a real time and user-friendly manner • Advance evidence-based policy, program development, and advocacy on behalf of children, youth and families • Build data literacy and the valid use of child health indicators • Promote integration in the development of national surveys and excellence in the construction and interpretation of child health indicators

35. Slides courtesy of CAHMI Topics Addressed by CAHMI Data and Measurement Tools • Coverage and Access • Insurance coverage, gaps in coverage and impact of uninsurance and type of coverage • Adequacy of insurance • Timely access to covered/needed care • Quality and Equity • Medical home for all children and children and youth with special health care needs • Mental, emotional and behavioral health • Health disparities for vulnerable populations (minorities, low income, by health status/CSHCN) • Prevention and Healthy Development • Childhood obesity (BMI, Activities, TV watching, etc) • Early childhood development • Transition to adulthood

36. Slides courtesy of CAHMI Why Should YOU use data? • Identifying/documenting needs – Data supports your assertion that specific changes or programs you advocate for are worthwhile • How many children in your state have what needs? • How do needs vary across states and why? • How do needs vary across subgroups of children within and across states and why? • How does data support your assumptions or what you you’re hearing from the field (providers, families, other agencies)? • Building partnerships • What partners could use this data: Public Programs, Health plans, Hospitals, Providers, community groups, faith based organizations? • How can you share data to support common efforts, improve care? • Educating Policymakers -- Data can describe who you are and why what you want is important • What are key policy issues for your initiative ? • What programs or groups need what information? • What data could help them learn about child health needs? • Advocacy – Data can strengthen your position that change is necessary • Are there key pressure points in program budgets or priorities coming up? • What methods would be most effective in presenting your case? • How could you use data in Fact Sheets, Testimony, the media, along with family stories? • Grant Writing • How can you use data to strengthen your proposal?