1. Using Data from the National Survey of Children with Special Health Care Needs Centers for Disease Control and Prevention National Center for Health Statistics Stephen Blumberg Julian Luke

2. Preparing to Download the Data Create a directory on your hard drive that will be used to store the required data files and programs. Create a directory on your hard drive that will be used to store the required data files and programs. Data files, programs, and format libraries will be stored here. Data files, programs, and format libraries will be stored here.

10. Downloading the Data SAS datasets and documentation are available at: SAS datasets and documentation are available at:http://www.cdc.gov/nchs/slaits.htm Join the SLAITS listserv to find out about updates Join the SLAITS listserv to find out about updates

15. Data Files Screener File Screener File Household File Household File CSHCN Interview File CSHCN Interview File Insurance Analysis File Insurance Analysis File

16. Screener File One record for each child One record for each child N = 372,174 N = 372,174 Use for… Use for… Proportion of children with SHCN Proportion of children with SHCN Demographic characteristics of CSHCN Demographic characteristics of CSHCN Variables include… CSHCN Screener Age Sex Race Ethnicity State of residence

17. Household File One record for each household One record for each household N = 196,888 N = 196,888 Use for… Use for… Proportion of households that include CSHCN Proportion of households that include CSHCN Demographic characteristics of these households Demographic characteristics of these households Variables include… Total number of CSHCN in household Household size Household income (relative to FPL) Metropolitan Statistical Area status State of residence

18. CSHCN Interview File One record for each randomly selected CSHCN with completed interview One record for each randomly selected CSHCN with completed interview N = 38,866 N = 38,866 Use for… Use for… Estimates of health and service use for CSHCN Estimates of health and service use for CSHCN Variables include… Relationship of respondent to child Health status Access to care Experience with care Adequacy of care Health insurance Impact of the special health care need on the family

19. Insurance Analysis File One record for each randomly selected child with completed insurance interview One record for each randomly selected child with completed insurance interview N = 215,162 N = 215,162 Use for… Use for… Estimates of health insurance coverage for all children Estimates of health insurance coverage for all children Variables include… Demographics Insurance coverage For low-income uninsured children… Reason why Medicaid/SCHIP experience Some health measures

24. Data File Type Data are stored on the website as compressed or zipped files. Data are stored on the website as compressed or zipped files. The smaller compressed files make downloading the files quicker. The smaller compressed files make downloading the files quicker. Once the files are downloaded, you will need to use another piece of software to uncompress the files. Once the files are downloaded, you will need to use another piece of software to uncompress the files.

29. Supporting Documentation Documentation Documentation Survey Instrument Survey Instrument Methodology Report Methodology Report Frequency Counts and Variable List Frequency Counts and Variable List SAS Input Files SAS Input Files Sample SAS Programs Sample SAS Programs

34. Associating Formats with the Data Files There are four files needed to create and attach formats to the data files. They are the following: There are four files needed to create and attach formats to the data files. They are the following: 1. Create_Master_Formats_Permanent.sas 2. Attach_Formats-Household.sas 3. Attach_Formats-Screener.sas 4. Attach_Formats-Interview.sas

39. Creating Formatted Permanent SAS Data Sets In addition to the four format files, you will need the following four files to create permanent SAS data sets. They are the following: In addition to the four format files, you will need the following four files to create permanent SAS data sets. They are the following: 1. Household_Formats.sas 2. Interview_Formats.sas 3. Screener_Formats.sas 4. Insurance_Formats.sas

50. SAS procedure that creates variable listing by position in the data set SAS procedure that creates unweighted variable value counts

53. Key Variables

54. Key Variables: CSHCN Status Name: NEEDTYPE Name: NEEDTYPE Location: Screener file Location: Screener file Levels: 1 = non-CSHCN, 2 = CSHCN Levels: 1 = non-CSHCN, 2 = CSHCN Derived from: CSHCN Screener Derived from: CSHCN Screener

55. Key Variables: State of Residence Name: STATE Name: STATE Location: All files Location: All files Levels: Separate numeric code for each state Levels: Separate numeric code for each state

56. Key Variables: Age Name: AGE Name: AGE Location: Screener file Location: Screener file Levels: Age in years Levels: Age in years 0 = Younger than one year Missing Data: Respondent did not know or refused to provide date of birth or age Missing Data: Respondent did not know or refused to provide date of birth or age

57. Key Variables: Sex Name: SEX Name: SEX Location: Screener file Location: Screener file Levels: 1 = male, 2 = female Levels: 1 = male, 2 = female

58. Key Variables: Ethnicity Name: HISPANIC Name: HISPANIC Location: Screener file Location: Screener file Levels: 1 = Hispanic origin, 0 = no Levels: 1 = Hispanic origin, 0 = no

59. Confidentiality Section 308d of the Public Health Service Act (42 U.S.C. 242m): Section 308d of the Public Health Service Act (42 U.S.C. 242m): “No information…may be used for any purpose other than the purpose for which it was supplied…[and] may not be published or released…if the particular establishment or person supplying the information or described in it is identifiable.” Prohibits the release of sub-state identifiers or contextual information Prohibits the release of sub-state identifiers or contextual information

60. Key Variables: Race Name: RACER, RACENAAN, RACEASIA, RACE_HI Name: RACER, RACENAAN, RACEASIA, RACE_HI Location: Screener file Location: Screener file Levels: Levels: RACER = White, Black, Other, Multirace RACER = White, Black, Other, Multirace RACENAAN adds Native American/AK Native RACENAAN adds Native American/AK Native RACEASIA adds Asian RACEASIA adds Asian RACE_HI adds Asian and Native Hawaiian / PI RACE_HI adds Asian and Native Hawaiian / PI Only RACER can be used for national estimates Only RACER can be used for national estimates

61. Key Variables: Income Name: POVLEVEL Name: POVLEVEL Location: Household file Location: Household file Levels: 9 categories relative to the Federal Poverty Level Levels: 9 categories relative to the Federal Poverty Level Derived from: Total number of household members and household income value Derived from: Total number of household members and household income value Missing Data: Total household members and/or household income were missing Missing Data: Total household members and/or household income were missing

62. Key Variables: Urban/Rural Identifier Name: MSASTATR Name: MSASTATR Location: Household file Location: Household file Levels: 1 = Yes, 0 = No Levels: 1 = Yes, 0 = No Missing Data: MSASTATR was suppressed in 16 states to protect the confidentiality of participants Missing Data: MSASTATR was suppressed in 16 states to protect the confidentiality of participants

63. Key Variables: Number of Children in HH Name: TOTKIDSR Name: TOTKIDSR Location: Household file Location: Household file Note: This variable refers to the number of children from the household in the screener data file. Due to suppression of some screener records from large households, this variable may be inaccurate for large households. Note: This variable refers to the number of children from the household in the screener data file. Due to suppression of some screener records from large households, this variable may be inaccurate for large households.

64. Key Variables: For Merging Data Files Unique Household Identifier: IDNUMR Unique Household Identifier: IDNUMR Unique Child Identifier: IDNUMXR Unique Child Identifier: IDNUMXR

73. Create first data set and keep only the variables you need

74. Then sort the data by the linking variable (IDNUMX / IDNUMXR)

75. Create second data set and keep only the variables you need

76. Then sort the data by the linking variable (IDNUMX / IDNUMXR)

77. Finally, create merged data set using MERGE and BY commands

78. Apply SAS FREQ procedure to create crosstab using variables from both data sets

80. Use Weighted Data Sampling weights to permit national and state-specific estimates of health characteristics Sampling weights to permit national and state-specific estimates of health characteristics Sampling weights are adjusted for potential non-response biases Sampling weights are adjusted for potential non-response biases Sampling weights are adjusted to account for non-coverage of non- telephone households Sampling weights are adjusted to account for non-coverage of non- telephone households

81. Three Weights Household weight (WEIGHT_H) Household weight (WEIGHT_H) Screener weight (WEIGHT_S) Screener weight (WEIGHT_S) Interview weight (WEIGHT_I) Interview weight (WEIGHT_I)  The same weights are used for national and state-level analyses.

82. Three Weights: Household Weight Name: WEIGHT_H Name: WEIGHT_H Location: Household file Location: Household file Unit of Analysis: Household Unit of Analysis: Household Representative of: Households with children nationally and in each state Representative of: Households with children nationally and in each state

83. Three Weights: Screener Weight Name: WEIGHT_S Name: WEIGHT_S Location: Screener file Location: Screener file Unit of Analysis: Child Unit of Analysis: Child Representative of: Children nationally and in each state Representative of: Children nationally and in each state For use when: Data analyzed are from the screener and household files For use when: Data analyzed are from the screener and household files

84. Three Weights: Interview Weight Name: WEIGHT_I Name: WEIGHT_I Location: Interview and Insurance file Location: Interview and Insurance file Unit of Analysis: Child Unit of Analysis: Child Representative of: When used with interview file, representative of CSHCN nationally and in each state. Representative of: When used with interview file, representative of CSHCN nationally and in each state. For use when: Data analyzed include variables that are not from the screener or household files For use when: Data analyzed include variables that are not from the screener or household files

91. Create data set and keep only the variables you need

92. Apply PROC FREQ procedure using the weight statement and the household weight

95. Variance Estimation Sample design involved clustering of children within households and stratification of household within states. Sample design involved clustering of children within households and stratification of household within states. Therefore, SUDAAN, STATA, or other such programs must be used to obtain estimates of variability and statistical significance. Therefore, SUDAAN, STATA, or other such programs must be used to obtain estimates of variability and statistical significance.

96. Sampling Variables Stratum: State (STATE) Stratum: State (STATE) PSU: Household (IDNUMR) PSU: Household (IDNUMR) In SUDAAN… In SUDAAN… PROC … DESIGN=WR; PROC … DESIGN=WR; NEST STATE IDNUMR; NEST STATE IDNUMR; WEIGHT WEIGHT_I;  Use appropriate weight WEIGHT WEIGHT_I;  Use appropriate weight

103. Create data set and keep only the variables you need

104. Then sort the data by the stratum and PSU variables

105. Run PROC CROSSTAB with the appropriate design, nest, and weight statements

107. http://www.cshcndata.org

108. http://www.cshcndata.org

109. http://www.cshcndata.org

110. For more information… Stephen Blumberg or Julian Luke Centers for Disease Control and Prevention National Center for Health Statistics 3311 Toledo Road Hyattsville, Maryland 20782 SBlumberg@cdc.govjluke@cdc.gov