Kathleen S. O’Connor, MPH Centers for Disease Control and Prevention

1. Health care, unmet needs & demographic characteristics of CSHCN who fledthe 2005 Gulf Coast Hurricanes Kathleen S. O’Connor, MPH Centers for Disease Control and Prevention National Center for Health Statistics 2008 AcademyHealth Annual Research Meeting June 8, 2008 Washington, DC Centers for Disease Control and Prevention National Center for Health Statistics

2. Acknowledgement Rosa M. Avila Bonnie Strickland Michael D. Kogan Stephen J. Blumberg Peter C. van Dyck

3. Presentation goalsall comparisons 0-17 years old (with one exception) • Compare children with & without special health care needs • Compare Gulf Coast1 CSHCN who did & did not evacuate (3)Describe CSHCN evacuees • demographic & SES characteristics • health care use, unmet health care & DME2 needs (during & post-evacuation) • housing status @ 2006 interview 1 Defined as Alabama, Florida, Louisiana, Mississippi & Texas 2 Durable medical equipment (DME)

4. Data source • 2005 – 2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) • Funder: Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB)

5. 2005 – 2006 NS-CSHCN • Data collection:Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS), State & Local Area Integrated Telephone Survey (SLAITS) mechanism • Sample frame: CDC’s National Immunization Survey (NIS)

6. How were CSHCN identified?

7. CSHCN Screener • Identified CSHCN using MCHB operative definition • 5-item parent-reported battery on the child’s health consequences • Need or use services, RX meds, specialized therapies, functional difficulties • If “yes” to any one of the 5 stem items and associated follow-up Qs = CSHCN • Non-condition specific approach reflects the intentionally broad definition of CSHCN Bethell et al., 2002; McPherson et al., 1998

8. 2005-2006 NS-CSHCNdesign features

9. Design features • Population-based cross-sectional study • Landline household telephone survey • Random-digit-dial (RDD) • R = parent/guardian knowledgeable about child’s health

10. LARGE survey • Sample split to screen for CSHCN two different ways • Main sample: • Screened 192,083 households that contained 364,841 children • Identified 56,014 CSHCN who lived in 44,923 screened households • Completed 40,480 detailed interviews about CSHCN • Referent sample: • 6,113 completed interviews with CSHCN (n=1,168) & non-CSHCN (n=4,945)

11. All was well with the 2005 – 2006 survey

12. …until Katrina & Rita visited

13. Hurricane questions (1) • Immediately stopped fielding the survey in affected areas through Fall 2005 • November 2005: MCHB requested additional questions to learn about evacuees

14. Hurricane questions (2) • Screening item for hurricane section: “Last year, did your child leave (his/her) home for one night or longer because of Hurricane Katrina or Rita?” If “yes”, child was defined as evacuee • Data collection: January 5, 2006 – February 7, 2007 • Did not go back to people interviewed prior to hurricane landfall to ask this item

15. Evacuees and non-evacuees by CSHCN status

16. Average # nights away from home after evacuation (p < 0.05) • CSHCN evacuees: 11.5 • non-CSHCN evacuees: 6.6

17. Given that… a higher percentage of CSHCN evacuated than non-CSHCN and when CSHCN left, they spent more nights away than non-CSHCN…

18. How did CSHCN evacuees & non-evacuees fare after the hurricanes?

19. Two comparison groups

20. Demographic & SES characteristics, health care & health status estimates CSHCN evacuees vs. CSHCN non-evacuees

21. Demographic characteristics (p < 0.05) 1FPL indicates Federal poverty level (derived from income-to-household size ratio & DHHS Federal poverty guidelines)

22. Health status (p < 0.05) • CSHCN evacuees were more likely to have a condition(s) that moderately/greatly affected their daily activities (33.1%) than CSHCN non-evacuees (23.3%) • Effect remained significant after controlling for SES & demographic factors • CSHCN 5 – 17 years old: CSHCN evacuees were more likely to miss 10+ school days due to illness (19.8%) than CSHCN non-evacuees (13.7%)

23. Health care (p < 0.05) • CSHCN evacuees were more likely to live in families that spent > 11 hours per week to provide and/or coordinate their health care (14.1%) than CSHCN non-evacuees (8.7%) • Effect remained significant after controlling for SES & demographic factors

24. Unmet needs: CSHCN evacuees

25. During evacuation • CSHCN required special arrangements to leave home: open-ended question • 14.0% of CSHCN evacuees required special arrangements to leave home - of these CSHCN: • 25.8% needed electricity for DME • 35.8% needed more medications, refills, or medical supplies After controlling for SES & demographic factors, CSHCN evacuees with condition(s) that moderately or greatly affected daily activities were more likely to need special arrangements during evacuation (p < 0.05)

26. Post-evacuation • 3.4% of CSHCN evacuee’s families had trouble finding temporary shelter due to the CSHCN’s health condition(s) • 28.5% of CSHCN evacuees needed health care while away from home

27. Post-evacuation • 13.1% of CSHCN evacuees needed medical equipment while away from home • After controlling for SES & demographic factors: • evacuees with condition(s) that greatly affected daily activities were more likely to need medical equipment • CSHCN evacuees who needed medical equipment post-evacuation were more likely to: • be 12 to 17 years old • live in a household with total household income of 0 to 99% FPL

28. Evacuee housing status @ time of 2006 interview • 89.6% of CSHCN evacuees moved back to their same home • Of those who did not move back home • 45.5% were still in temporary/short-term housing • After controlling for SES & demographic factors: • evacuees with condition(s) that greatly affected daily activities were less likely to move back home • CSHCN who moved back home post-evacuation were: • less likely to be non-Hispanic black • less likely to live in a single mother-led household

29. Conclusions (1) • Approximately 24% of CSHCN who lived within five Gulf Coast states evacuated b/c of the hurricanes • CSHCN evacuees were significantly more likely: • to be non-Hispanic black • lived in lower income and single mother-led households

30. Conclusions (2) • CSHCN evacuees were more likely to: • have more severe condition(s) that required additional: • care coordination • special arrangements to leave home • medical equipment • The majority of CSHCN evacuees moved back to the same home • CSHCN evacuees who were less likely to move back home post-evacuation: • had condition(s) that greatly impacted daily activities • were non-Hispanic black • lived in single mother-led households

31. References Bethell CD, Read D, Stein RE, et al. Identifying children with special health care needs: development and evaluation of a short screening tool. Ambulatory Pediatrics 2002;2:38-48. *Blumberg SJ, Olsen L, Frankel M, et al. Design and Operation of the National Survey of Children with Special Health Care Needs, 2001. National Center for Health Statistics. Vital Health Stat 1(41). 2003. *Blumberg SJ, Welch EM, Chowdhury SR, et al. Design and Operation of the National Survey of Children with Special Health Care Needs, 2005-06. National Center for Health Statistics. Vital Health Stat 1. Forthcoming. Advance access online version (November 28, 2007). McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137-140. * immediately available at: www.cdc.gov/nchs/slaits.htm

32. Contact information Kathy O’Connor koconnor1@cdc.gov 301.458.4181