Analyzing State Data from the National Survey of CSHCN

1. Analyzing State Data from the National Survey of CSHCN Ginny Sharp Center for Children with Special Needs Children’s Hospital & Regional Medical Center Seattle, WA Funding provided through contract with Washington State Department of Health, CSHCN Program

2. Overview • Outline how to obtain and use the National CSHCN Survey at the state level • Provide examples of some of the analyses Washington State is using in our MCH 5-year Needs Assessment planning process • Discuss analytic issues in using these data at the state level…and some potential “work-arounds” 2 Center for Children with Special Needs

3. 5 Steps to Getting Started • Study the website: http://www.cdc.gov/nchs/about/major/slaits/cshcn.htm • Familiarize yourself with the Survey Instrument & Methodology Report • Download data files • Subset the National data files to your state’s data • Merge data from 3 files for your state to create appropriate data files for analysis Center for Children with Special Needs 3

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6. Step 2: The “Bible” Contains all of the details you need to know to appropriately analyze data from this survey. Center for Children with Special Needs 6

7. Step 3: Download Files Center for Children with Special Needs 7

8. Step 4. Subset to Your State’s Data • Unzip national data files • SAS7BDAT files • Rather large: both SCREENER & INTERVIEW files are 80-90 MB • Translate into format needed for your statistical software [Beware of missing value codes!] • Select STATE = ___ [your state’s number] • Can combine Translation & Subsetting in one step with Stat/Transfer • Add Value Labels if not using SAS/SUDAAN Center for Children with Special Needs 8

9. Step 5. Linking the Data Files • HOUSEHOLD • FILE • HH ID # • State • MSA Status • Other Language • Counts of Adults & Kids in HH by Sex & CSHCN Status • Poverty Level • Cash Assistance? • Interview Flag • WEIGHT_H • SCREENER • FILE • HH ID # • Child ID # • State • Age • Sex • Race/Ethnicity • Screener Questions • CSHCN Flag • Interview Flag • WEIGHT_S • INTERVIEW • FILE • HH ID # • Child ID # • State • CSHCN Flag • Age • Mother’s Education • 9 content sections • WEIGHT_I Center for Children with Special Needs 9

10. Making Sense of YOUR Data • Replicate NCHS analyses to insure proper calculation methods, especially standard errors • Methodology Report: Prevalence Rates • Table 32: Household File • Table 33: Screener File • Strata = STATE • PSU = IDNUMR • Weight = WEIGHT_H / WEIGHT_S Center for Children with Special Needs 10

11. Making Sense: Replicate • Core Outcome Measures in Progress Toward Implementing Community-Based Systems of Services for CSHCN: Summary Tables from the National Survey of CSHCN, 2001 • Based on Interview File data • Strata = STATE • PSU = IDNUMR • Weight = WEIGHT_I Center for Children with Special Needs 11

12. Making Sense: Validate • Complex system of individual weights were created by NCHS staff to insure that surveyed population in each state accurately represents “real” state populations • At the time survey weights were created, some data necessary to define state variables were not available…and still aren’t • Validate using all available state data sources Center for Children with Special Needs 12

13. Validating WA’s HH Data Center for Children with Special Needs 13

14. Validating WA’s Screener Data Center for Children with Special Needs 14

15. Validating Washington’s CSHCN Interview Data • No comparable population-based data sources in WA • “Partial validators” • CSHCN Screener included in Medicaid CAHPS survey (biased sample) • CSHCN Screener partially included in BRFSS 2000 (no way to evaluate effect of leaving out parts of some questions) Center for Children with Special Needs 15

16. Making Sense: Educate • Must understand what the variables are measuring • Who’s identified as CSHCN by the CSHCN Screener? See article by C. Bethell, et al., Ambulatory Pediatrics, Jan-Feb 2002 • MSASTATR -- county level designation only; suppressed for 16 states [see Methodology Report] Center for Children with Special Needs 16

17. Examples from Washington State

18. WA / US Frequencies • CSHCN Household prevalence [HH file] • CSHCN Population prevalence [Screener file] • % CSHCN by sex, race, Hispanic ethnicity, age groups, poverty level (% of FPL) • CSHCN “Complexity”: Rx meds only, service use only, Rx meds + service use, functional limitations Center for Children with Special Needs 18

19. WA CSHCN by Complexity Center for Children with Special Needs Source: WA Screener file (n=6629) 19

20. CSHCN Priorities Identified in previous 5 Year Needs Assessment  • Lack of coordination of services • Lack of routine source of data • Health Care Financing issues • Inadequacy of Quality Assurance for CSHCN • Valuing families as partners and culturally competent care • Information resources for families, providers, health plans and others • Availability of support services for families   Center for Children with Special Needs 20

21. Which Kids NEED Care Coordination? Distribution of CSHCN whose families NEED Care Coordination across the four condition complexity categories. Center for Children with Special Needs 21

22. Care Coordination for WA CSHCN Center for Children with Special Needs 22

23. Insurance Coverage: Source of Insurance Source: WA Interview file (n=756). Center for Children with Special Needs 23

24. Insurance Coverage: Ever NOT insured past 12 months by Income Source: WA Interview file (n=756). Center for Children with Special Needs 24

25. Any Unmet Child Health Need by Family Income Center for Children with Special Needs 25

26. Services Needed by WA CSHCN Each bar represents the % of WA CSHCN needing that type of care in the past 12 months. Center for Children with Special Needs 26

27. Unmet Health Needs of WA CSHCN: % of those who NEED service Center for Children with Special Needs 27

28. Percent of WA CSHCN 3-17 Receiving Special Education Services Center for Children with Special Needs 28

29. “Work-Around” Topics • Rural/urban differences in access to care • MSA definition pretty useless for WA • combine WA, OR, ID, MT data through NCHS Research Data Center? • Source of health insurance • gross public/private/both/none only • Age-specific utilization/impacts • still trying to find age groups that “work” for different analyses Center for Children with Special Needs 29

30. Next Steps • Encourage more states to use these data • Find a way to share “work in progress” & discuss new measures, aggregate variables, stratifications that work • Identify appropriate “peer states” • Continue to generate analyses from WA’s survey data in response to questions from MCH stakeholders in our Needs Assessment Planning Process Center for Children with Special Needs 30

31. Contact Information • For survey analysis information: Ginny Sharp ginny.sharp@seattlechildrens.org (206) 987-5311 • For use in Needs Assessment Planning: Stacey DeFries Stacey.De_Fries@doh.wa.gov (360) 236-3559 Center for Children with Special Needs 31