1. Methodologic Overview of Two National Data Sets Centers for Disease Control and Prevention National Center for Health Statistics Issues in Comparing Findings Across and Within Data Sets for CSHCN

2. Methodologic Overview of Two National Data Sets Presenter:Stephen Blumberg Presenter:Stephen Blumberg Collaborators:Christina Bethell Debra Read Paul Newacheck

3. Two National Data Sets National Survey of Children with Special Health Care Needs National Survey of Children with Special Health Care Needs National Survey of Children’s Health National Survey of Children’s Health Both conducted as part of CDC’s State and Local Area Integrated Telephone Survey Both conducted as part of CDC’s State and Local Area Integrated Telephone Survey Both sponsored by the Maternal and Child Health Bureau at HRSA Both sponsored by the Maternal and Child Health Bureau at HRSA

4. National Survey of Children with Special Health Care Needs, 2001 Produced national and state-based estimates on the prevalence and impact of children with special health care needs (CSHCN) Produced national and state-based estimates on the prevalence and impact of children with special health care needs (CSHCN) Is being repeated in 2005 – 2006 Is being repeated in 2005 – 2006

5. National Survey of CSHCN Interview Process in 2001 Screened 2.6 million telephone lines to identify households with children under age 18 Screened 2.6 million telephone lines to identify households with children under age 18 Screened all children to identify CSHCN Screened all children to identify CSHCN Asked detailed questionnaire for 38,866 CSHCN (~ 750 per state) Asked detailed questionnaire for 38,866 CSHCN (~ 750 per state) Asked about health insurance coverage for an additional 176,296 children without special health care needs Asked about health insurance coverage for an additional 176,296 children without special health care needs

6. National Survey of CSHCN Detailed Questionnaire Health and functional status Health and functional status Access to care, utilization, unmet need Access to care, utilization, unmet need Health insurance and adequacy Health insurance and adequacy Care coordination Care coordination Satisfaction with care Satisfaction with care Impact on the family Impact on the family

7. National Survey of Children’s Health, 2003 Produced national and state-based estimates on the health and well-being of children, their families, and their communities Produced national and state-based estimates on the health and well-being of children, their families, and their communities Will be repeated in 2007 Will be repeated in 2007

8. National Survey of Children’s Health Interview Process in 2003 Screened 1.9 million telephone lines to identify households with children < 18 years Screened 1.9 million telephone lines to identify households with children < 18 years Randomly selected one child to be the target of an interview on health and well-being Randomly selected one child to be the target of an interview on health and well-being Asked detailed questionnaire for 102,353 children (~ 2,000 per state) Asked detailed questionnaire for 102,353 children (~ 2,000 per state) Cash incentives were offered to known households with children who had not completed the interview Cash incentives were offered to known households with children who had not completed the interview

9. National Survey of Children’s Health Detailed Questionnaire Health and functional status Health and functional status Health insurance coverage Health insurance coverage Health care access and utilization Health care access and utilization Medical home characteristics Medical home characteristics Age-specific well-being questions Age-specific well-being questions Family functioning Family functioning Parental health Parental health Neighborhood characteristics Neighborhood characteristics Demographics Demographics

10. Both Surveys Identify CSHCN CSHCN Screener CSHCN Screener Does your child currently need or use medicine prescribed by a doctor, other than vitamins? Does your child currently need or use medicine prescribed by a doctor, other than vitamins? Does your child need or use more medical care, mental health, or educational services than is usual for most children of the same age? Does your child need or use more medical care, mental health, or educational services than is usual for most children of the same age? Is your child limited or prevented in any way in his/her ability to do the things most children on the same age can do? Is your child limited or prevented in any way in his/her ability to do the things most children on the same age can do?

11. Both Surveys Identify CSHCN CSHCN Screener CSHCN Screener Does your child need or get special therapy, such a physical, occupational, or speech therapy? Does your child need or get special therapy, such a physical, occupational, or speech therapy? Does your child have any kind of emotional, developmental, or behavioral problem for which he/she needs treatment or counseling? Does your child have any kind of emotional, developmental, or behavioral problem for which he/she needs treatment or counseling? Follow-up questions Follow-up questions Is this because of any medical, behavioral, or other health condition? Is this because of any medical, behavioral, or other health condition? Is this a condition that has lasted or is expected to last 12 months or longer? Is this a condition that has lasted or is expected to last 12 months or longer?

12. Both Surveys Identify CSHCN National Survey of CSHCN, 2001 National Survey of CSHCN, 2001 Prevalence = 12.8% Prevalence = 12.8% National Survey of Children’s Health, 2003 National Survey of Children’s Health, 2003 Prevalence = 17.6% Prevalence = 17.6%

13. Why Might Prevalence Rates Differ from One Survey to the Next? Dates of data collection Dates of data collection Method of data collection and estimation Method of data collection and estimation Mode Mode Sampling frame Sampling frame Interviewers Interviewers Weighting methods Weighting methods Sample size and sampling error Method of identification Respondent Recall period Question wording Question ordering Question context and introduction

14. Mode and Sampling Frame National Survey of CSHCN National Survey of CSHCN Random-digit-dial telephone survey Random-digit-dial telephone survey Stratified by state Stratified by state No oversampling No oversampling National Survey of Children’s Health National Survey of Children’s Health Random-digit-dial telephone survey Random-digit-dial telephone survey Stratified by state Stratified by state No oversampling No oversampling

15. Interviewers National Survey of CSHCN National Survey of CSHCN All interviews conducted by Abt Associates Inc. All interviews conducted by Abt Associates Inc. National Survey of Children’s Health National Survey of Children’s Health All interviews conducted by Abt Associates Inc. All interviews conducted by Abt Associates Inc.

16. Weighting National Survey of CSHCN National Survey of CSHCN All weights calculated by Abt Associates Inc. All weights calculated by Abt Associates Inc. Adjusted for nonresponse and noncoverage of nontelephone households Adjusted for nonresponse and noncoverage of nontelephone households Poststratified by age, sex, race/ethnicity, mother’s education, and household income Poststratified by age, sex, race/ethnicity, mother’s education, and household income National Survey of Children’s Health National Survey of Children’s Health All weights calculated by Abt Associates Inc. All weights calculated by Abt Associates Inc. Adjusted for nonresponse and noncoverage of nontelephone households Adjusted for nonresponse and noncoverage of nontelephone households Poststratified by age, sex, race/ethnicity, highest education in household, and household size Poststratified by age, sex, race/ethnicity, highest education in household, and household size

17. Sample Size and Sampling Error National Survey of CSHCN National Survey of CSHCN 373,055 children aged 0-17 373,055 children aged 0-17 Response rate = 63.4% Response rate = 63.4% No incentives No incentives National Survey of Children’s Health National Survey of Children’s Health 102,353 children aged 0-17 102,353 children aged 0-17 Response rate = 55.3% Response rate = 55.3% Incentives offered to families that initially refused to participate Incentives offered to families that initially refused to participate

18. Method of Identifying CSHCN National Survey of CSHCN National Survey of CSHCN CSHCN Screener asks about consequences currently experienced CSHCN Screener asks about consequences currently experienced Respondent was generally the mother (78.9%) or father (17.2%) Respondent was generally the mother (78.9%) or father (17.2%) National Survey of Children’s Health National Survey of Children’s Health CSHCN Screener asks about consequences currently experienced CSHCN Screener asks about consequences currently experienced Respondent was generally the mother (78.6%) or father (17.3%) Respondent was generally the mother (78.6%) or father (17.3%)

19. Question Wording National Survey of CSHCN National Survey of CSHCN Family-level (all children) Family-level (all children) Do any of your children currently need or use medicine prescribed by a doctor? Who is that? National Survey of Children’s Health National Survey of Children’s Health Child-level (one randomly selected child) Child-level (one randomly selected child) Does (CHILD) currently need or use medicine prescribed by a doctor?

20. Question Ordering National Survey of CSHCN National Survey of CSHCN 1) Do any of your children need or use more medical care, mental health, or educational services than is usual for most children of the same age? 1) Do any of your children need or use more medical care, mental health, or educational services than is usual for most children of the same age? 2) Do any of your children currently need or use medicine prescribed by a doctor? 2) Do any of your children currently need or use medicine prescribed by a doctor? National Survey of Children’s Health National Survey of Children’s Health 1) Does (CHILD) currently need or use medicine prescribed by a doctor? 1) Does (CHILD) currently need or use medicine prescribed by a doctor? 2) Does (CHILD) need or use more medical care, mental health, or educational services than is usual for most children of the same age? 2) Does (CHILD) need or use more medical care, mental health, or educational services than is usual for most children of the same age?

21. Question Context National Survey of CSHCN National Survey of CSHCN CSHCN Screener questions were the first health questions asked CSHCN Screener questions were the first health questions asked Immediately followed demographics Immediately followed demographics National Survey of Children’s Health National Survey of Children’s Health CSHCN Screener questions were not the first health questions asked CSHCN Screener questions were not the first health questions asked Immediately followed demographics, overall health status, height, and weight Immediately followed demographics, overall health status, height, and weight

22. Survey Introduction National Survey of CSHCN National Survey of CSHCN “…the survey asks about the health and health care of the child or children under 18…” “…the survey asks about the health and health care of the child or children under 18…” “ Depending on the health characteristics of your children, these questions take between 5 and 25 minutes, but for most families, it’s around 10 minutes.” “ Depending on the health characteristics of your children, these questions take between 5 and 25 minutes, but for most families, it’s around 10 minutes.” National Survey of Children’s Health National Survey of Children’s Health “…the survey will be about the health and health care of (CHILD).” “…the survey will be about the health and health care of (CHILD).” “The survey will take about 25 minutes.” “The survey will take about 25 minutes.”

23. Question Introduction National Survey of CSHCN National Survey of CSHCN “The next questions are about any kind of health problems, concerns, or conditions that may affect your children’s behavior, learning, growth, or physical development.” “The next questions are about any kind of health problems, concerns, or conditions that may affect your children’s behavior, learning, growth, or physical development.” “Some of these health problems may affect your children’s abilities and activities at school or at play. Some of these problems affect the kind or amount of services your children may need or use.” “Some of these health problems may affect your children’s abilities and activities at school or at play. Some of these problems affect the kind or amount of services your children may need or use.” National Survey of Children’s Health National Survey of Children’s Health “The next questions are about any kind of health problems, concerns, or conditions that may affect your children’s behavior, learning, growth, or physical development.” “The next questions are about any kind of health problems, concerns, or conditions that may affect your children’s behavior, learning, growth, or physical development.” Nothing more Nothing more

24. Why Might Wording, Ordering, Context, and Introduction Matter? CSHCN Screener includes difficult concepts CSHCN Screener includes difficult concepts Does your child currently need…? Does your child currently need…? Does your child need or use more...than is usual for most children of the same age? Does your child need or use more...than is usual for most children of the same age? …limited…in his/her ability to do the things most children of the same age can do? …limited…in his/her ability to do the things most children of the same age can do? Is this because of any medical, behavioral, or other health condition? Is this because of any medical, behavioral, or other health condition? Is this a condition that has lasted or is expected to last 12 months or longer? Is this a condition that has lasted or is expected to last 12 months or longer?

25. Final Thought Why do we identify CSHCN? Why do we identify CSHCN? To monitor prevalence or trends in the population To monitor prevalence or trends in the population To identify children and families who need services or other assistance To identify children and families who need services or other assistance To assess equalization of opportunity To assess equalization of opportunity Differences in prevalence may not matter for researchers focusing on these last two reasons Differences in prevalence may not matter for researchers focusing on these last two reasons

26. For more information Stephen J. Blumberg, Ph.D. Stephen J. Blumberg, Ph.D. National Center for Health Statistics 3311 Toledo Road, Room 2112 Hyattsville, Maryland 20782 sblumberg@cdc.gov sblumberg@cdc.gov Christina Bethell’s talk, Monday, 9:00 AM Christina Bethell’s talk, Monday, 9:00 AM “Comparing and interpreting findings on the prevalence and health and health care service need characteristics of children and youth with special health care needs (CYSHCN) across three new national data sets”