Pre-Release Briefing On Prevalence of Paralysis In The United States, 2008

1. Pre-Release Briefing On Prevalence of Paralysis In The United States, 2008 _________ The University of New Mexico  Health Sciences Center SCHOOL OF MEDICINE

2. Disclaimer The information in this pre-release briefing is not intended for release or distribution at this time. Please do not disseminate information from this briefing or quote material from it until the information has been publically released on April 21st, 2009. For more information, contact Joe Canose Jcanose@ChristopherReeve.org

3. About This Briefing This survey was developed under a multi-year cooperative agreement between the Paralysis Resource Center and the Division of Disability and Health Policy, Center for Development and Disability, University of New Mexico School of Medicine.

4. Cooperative Agreement Activities • PRC Evaluation • Policy Development: Paralysis Task Force • Surveillance • Quality of Life Grant Program Development and Evaluation • Multi-Cultural Outreach Program

5.  Agenda • The Problem • Survey Development Process • Top-Level Results • Questions

6.  The Problem

7. Findings • …too little valid and reliable information [regarding prevalence of paralysis] exists that can be used to shape paralysis-related policies, programs and services. • Advancement of paralysis as a public health issue requires significantly more information about such issues as how many people live with paralysis (prevalence).

8. Recommendation Develop and implement a paralysis population survey consistent with the definition of paralysis developed at the consensus conference that collects information on the prevalence of paralysis stratified by key variables such as age, gender, geography and ethnicity.

9. Survey Development Process 2005 - 2008 Assessment of Existing Data Collection Efforts National Consensus Conference Cognitive Testing Survey Administration and Analysis

10. Goal …to minimize two potential sources of error: • Measurement error: improperly worded questions or question order on the survey itself • Sampling error: sampling frame and strategy; how telephone numbers were selected; potential under-representation of some groups such as Hispanics or African-Americans

11. University of Kansas Study Michael Fox, Jennifer Rowland, Dee Vernberg, Katherine Grobe, Glen W. White and Andrew Rosdahl. Developing an Action Plan to Improve the Quality and the Quantity of Paralysis Data. University of Kansas Medical Center and Research and Training Center on Independent Living, University of Kansas, 2005. • Identify paralysis measurement systems in use • Examine the validity of prevalence estimates based on these systems • Identify promising paralysis measurement reporting systems • Recommend strategies to implement a national data collection effort

12. Findings • No uniform, consistent constitutive definitions of paralysis • Scattered data collection efforts based on clinical data with inconsistent sampling frames • Conceptually ambiguous and conflicting operational definitions (counting rules) • “Fuzzy” core constructs/domains such as presence/absence, cause, severity, duration or impact

13. 2006 Consensus Conference

14. Conceptual Framework

15. Constitutive Definition “Paralysis is a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities.”

16. Operational Definition “Do you or does anyone in this household have any difficulty moving their arms or legs?“ Due To: Accident Spinal Cord Injury Traumatic Brain Injury Disease or Condition Stroke ALS/Lou Gehrig’s Multiple Sclerosis Neurofibromatosis Syringomyelia Poisoning Muscular Atrophy Post-Polio Syndrome Epidural infection Guillain Barre Syndrome Transverse Myelitis Chiari malformation Cerebral Palsy Fredrich’s Ataxia Complications from surgery Spina Bifida

17. Cognitive Testing • Initial version of instrument developed at Consensus Conference • Refinement of operational definition – panel of physicians (Revision) • Recruitment of 100 study participants • Survey administered via phone with follow-up in-person interview or focus group (Revision) • Initial random-digit dial administration to 1,000 people (Revision) • Second random-digit dial administration to second wave of 1,000 people (Revision)

18. Survey Administration

19.  • Survey was administered between May and September, 2008 • 33,348 households in the United States • stratified, single-stage random-digit-dialing sample of telephone households • Sample telephone numbers are computer generated • One adult respondent is randomly selected using a "Most Recent Birthday Method" of respondent selection

20.  • 30,000 national households: 1,000 in each of 30 waves • 2,000 households using ICR’s HispanicEXCEL Omnibus: 1,000 in each of 2 waves • 1,000 in a custom study of African Americans

21. Weighting • Raw data weighted to 2008 Current Population Survey estimates on education, age, region, and gender for each racial group • Weighted by average household sample size: resulting total population figure was 304,228,800 • Weighted for adult population (18+) as well as total population • As October 9, 2008, the US census estimate for current population is 305,371,797

22. Items Person-Level Variables Cause Duration Severity Gender Ethnicity Hispanic Status State Age Military-related Marital Status Education Political Affiliation Year Occurred Employment Status Metro.Status Code Census Region and Division Household-Level Variables Income Household Size & Composition Own/Rent Number of Telephone Lines

23.  Initial Results For Paralysis

24. Prevalence Figure One Prevalence of Paralysis Margin of Error: ± 3.91% Range = 5,377,196 to 5,814,804 at 95% confidence interval

25. Causes Figure Two Causes of Paralysis N= 5,596,000 Note: Prevalence estimates in Figure Two are specific to individuals who indicated that they are paralyzed due to these causes. Therefore, these figures differ from estimates derived solely or primarily from medical diagnoses alone.

26. Age Distribution Figure Three Age Distribution for Respondents Indicating They are Paralyzed N= 5,503,000 Mean Age : 52 years Standard Deviation: 18 years

27. Years Since Onset Figure Four Years Since Onset of Paralysis N = 5,250,085 Mean number of years since onset of paralysis: 15.6 Standard Deviation: 15.43 years

28. Degree of Difficulty Figure Five Degree of Difficulty in Moving Extremities at the Current Time Reported by Individuals Indicating They are Paralyzed N = 5,541,000

29. Gender Figure Six Paralysis By Gender N = 5,588,000 Margin of Error: ± 1.474% Range (Females): 2,536,059 to 2,611,941; Range (Males): 2,969,574 to 3,058,426 at 95% confidence interval

30. Ethnicity & Paralysis Figure Seven Ethnic Identity Of Respondents Indicating They Are Paralyzed N = 4,796,000

31. Ethnicity Figure Eight Ethnic Identity of Paralyzed Respondents Compared to Ethnic Identity in the United States N (Paralyzed) = 4,796,000 Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

32. Hispanic Status Figure Nine Hispanic Status of Paralyzed Respondents Compared to Hispanics in the United States N (Hispanic Paralyzed) = 671,000; N (Non-Hispanic Paralyzed) = 4,874,000; N (Both) = 5,544,000 Margin of Error: ± 1.85% Range (Hispanic): 658,586 to 683,414 at 95% confidence interval Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

33. Household Income Figure Ten Annual Household Income of Paralyzed Respondents Compared to Annual Household Income in the United States N (Paralyzed) = 4,075,000 Census data from U.S. Census Bureau, Current Population Survey, 2008 Annual Social and Economic Supplement, HINC-01: Selected Characteristics of Households by Total Money Income in 2007

34. Military Service Figure Eleven Percentage of Respondents Who Became Paralyzed as a Result of an Accident or Injury While Serving in the Military N = 963,000

35.  Initial Results For Spinal Cord Injury

36. Causes Figure Twelve Causes of Spinal Cord Injuries N= 1,275,000

37. Age Distribution Figure Thirteen Age Distribution for Respondents Indicating They Have a Spinal Cord Injury N= 1,263,000 Mean age: 48; Standard Deviation: 15

38. Years Since Onset Figure Fourteen Years Since Onset of Spinal Cord Injury N = 1,246,403 Mean number of years since onset of SCI: 14.01 years; Standard Deviation: 12.37 years

39. Gender Figure Fifteen Spinal Cord Injury by Gender N = 1,270,000 Margin of Error: ± 1% Range (Females): 490,050 to 499,950; Range (Males): 766,260 to 781,740 at 95% confidence interval

40. Ethnicity & SCI Figure Sixteen Ethnic Identity Of Respondents Indicating They Have a SCI N = 1,097,000

41. Figure Seventeen Ethnic Identity of Respondents With a Spinal Cord Injury Compared to Ethnic Identity in the United States N (SCI) = 1,043,000 Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

42. Hispanic Status Figure Eighteen Hispanic Identity Of Respondents Indicating They Have a Spinal Cord Injury In Comparison to Hispanics in the United States N (Hispanic SCI) = 161,000; N (Non-Hispanic SCI) = 1,108,000; N (Both) = 1,269,000 Margin of Error: ± 2% Range (Hispanic): 157,780 to 164,220 at 95% confidence interval Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

43. Household Income Figure Nineteen Annual Household Income Of Respondents Who Report a Spinal Cord Injury Compared to Annual Household Income in the United States N (SCI) = 904,000 Census data from U.S. Census Bureau, Current Population Survey, 2008 Annual Social and Economic Supplement, HINC-01: Selected Characteristics of Households by Total Money Income in 2007

44. Dissemination Release on April 21/22 Press conference at National Press Club Capital Briefing CDC Disability and Health Conference in New Orleans

45. Questions Mr. Joe Canose 800-539-7309JCanose@ChristopherReeve.org Dr. Anthony Cahill (505) 272-2990 ACahill@salud.unm.edu