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

Pre-Release Briefing On Prevalence of Paralysis In The

United States, 2008

The University of New Mexico Health Sciences CenterSCHOOL OF MEDICINE

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

[email protected]

mailto:[email protected]

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.

Cooperative Agreement Activities

PRC Evaluation

Policy Development: Paralysis Task Force

Surveillance

Quality of Life Grant Program Development and Evaluation

Multi-Cultural Outreach Program

Agenda

The Problem

Survey Development Process

Top-Level Results

Questions

The Problem

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).

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.

Survey Development Process 2005 - 2008

1. Assessment of Existing Data Collection Efforts

2. National Consensus Conference

3. Cognitive Testing

4. Survey Administration and Analysis

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

University of KansasStudy

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

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.

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

2006 ConsensusConference

Conceptual Framework

Constitutive Definition

“Paralysis is a central nervous system disorder resulting in difficulty

or inability to move the upper or lower extremities.”

Operational Definition

AccidentSpinal Cord Injury Traumatic Brain Injury

Disease or Condition

Stroke ALS/Lou Gehrig’s Multiple SclerosisNeurofibromatosis Syringomyelia Poisoning Muscular Atrophy Post-Polio Syndrome Epidural infectionGuillain Barre Syndrome Transverse Myelitis Chiari malformationCerebral Palsy Fredrich’s Ataxia Complications from surgery Spina Bifida

“Do you or does anyone in this household have any difficulty moving their arms or legs?“

Due To:

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)

Survey Administration

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

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

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

Items

Cause Duration SeverityGender Ethnicity Hispanic StatusState Age Military-relatedMarital Status Education Political AffiliationYear Occurred Employment Status Metro.Status Code

Census Region and Division

Person-Level Variables

Household-Level Variables

Income Household Size & Composition

Own/Rent Number of Telephone Lines

Initial Results For Paralysis

Prevalence

Figure OnePrevalence of ParalysisMargin of Error: ± 3.91%

Range = 5,377,196 to 5,814,804 at 95% confidence interval

Not Reporting Paralysis 298,632,000

(98.16%)

Reporting Some Form Of Paralysis 5,596,000

(1.84%)

Post-Polio Syndrome272,000 (5%)

Cerebral Palsy 412,000 (7%)

Neurofibromatosis 212,000 (4%)

Traumatic Brain Injury 242,000 (4%)

Spinal Cord Injury 1,275,000 (23%)

Multiple Sclerosis 939,000 (17%)

Unspecified Birth Defect 110,000 (2%)

Stroke 1,608,000 (29%)

Other 526,000 (9%)

Causes

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.

Figure TwoCauses of Paralysis

N= 5,596,000

Age DistributionFigure Three

Age Distribution for Respondents Indicating They are ParalyzedN= 5,503,000

Mean Age : 52 yearsStandard Deviation: 18 years

4.6%6.6%

8.2%

24.4%22.8%

15.2%

11.9%

6.4%

0%

5%

10%

15%

20%

25%

30%

0-19 20-29 30-39 40-49 50-59 60-69 70-79 80+

Years Since Onset

Figure FourYears Since Onset of Paralysis

N = 5,250,085Mean number of years since onset of paralysis: 15.6

Standard Deviation: 15.43 years

Degree of Difficulty

Figure FiveDegree of Difficulty in Moving Extremities at the Current Time Reported by

Individuals Indicating They are Paralyzed N = 5,541,000

A Lot of Difficulty 2,043,000 (36%)

Some Difficulty 1,580,000 (29%)

A Little Difficulty 921,000 (17%)

No Difficulty 94,000 (2%)

Completely Unable 903,000 (16%)

GenderFigure Six

Paralysis By GenderN = 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

Female 2,574,000 (46%)

Male 3,014,000 (54%)

Ethnicity & Paralysis

Figure SevenEthnic Identity Of Respondents Indicating They Are Paralyzed

N = 4,796,000

White/Caucasion 3,731,000 (77.8%)

Asian 15,000 (0.3%)

Other 40,000 (0.8%)

Native American/Alaskan

Native 176,000 (3.7%)

Black/African American, 827,000

(17.2%)

Two or More Races 7,000 (0.1%)

EthnicityFigure Eight

Ethnic Identity of Paralyzed Respondents Compared to Ethnic Identity in the United States

N (Paralyzed) = 4,796,000

77.8%74.1%

17.2%

12.4%

3.7%0.8% 0.3%

4.4%0.1% 2.1% 0.8%

6.2%

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

White/Caucasion Black/AfricanAmerican

NativeAmerican/Alaskan

Native

Asian Two or More Races Other

Sample

Census

Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of

the Census.

Hispanic StatusFigure 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

12.1% 14.8%

87.9% 85.2%

0%

20%

40%

60%

80%

100%

Paralysis US Census

Hispanic Not Hispanic

Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

Household IncomeFigure Ten

Annual Household Income of Paralyzed Respondents Compared to Annual Household Income in the United States

N (Paralyzed) = 4,075,000

24.0%

15.4%

9.5% 8.9%

17.6%

11.5%

19.6%

4.7%

6.3%

10.3% 10.0%

3.7%

6.2%

9.9%8.7%

7.0%5.8%

10.0%

5.2%5.6%

0.0%

5.0%

10.0%

15.0%

20.0%

25.0%

30.0%

LESS THAN$10,000

$10,000 BUTLESS THAN

$15,000


$20,000


$25,000


$30,000


$40,000


$50,000


$75,000


$100,000

$100,000OR MORE

People with Paralysis Census

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

Military Service

Figure ElevenPercentage of Respondents Who Became Paralyzed as a Result of an Accident or Injury While Serving in the Military

N = 963,000

Not-Military Related 896,000 (93%)

Paralysis Resulting From Serving in the

Military 67,000 (7%)

Initial Results For Spinal Cord Injury

CausesFigure Twelve

Causes of Spinal Cord InjuriesN= 1,275,000

Birth Defect 34,000 (3%)

Natural Disaster 8,000 (1%)

Other 76,000 (6%)

Victim of Violence 57,000 (4%)

Sporting/Recreation Accident 206,000

(16%)

Fall, 112,000 (9%)Accident Working

362,000 (28%)

Motor Vehicle Accident 311,000

(24%)

Unknown/No Response 109,000

(9%)

Age DistributionFigure Thirteen

Age Distribution for Respondents Indicating They Have a Spinal Cord InjuryN= 1,263,000

Mean age: 48; Standard Deviation: 15

1.0%

12.0% 11.5%

30.1%

24.9%

11.1%

5.7%3.7%

0%

5%

10%

15%

20%

25%

30%

35%

0-19 20-29 30-39 40-49 50-59 60-69 70-79 80+

Years Since OnsetFigure 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

GenderFigure Fifteen

Spinal Cord Injury by GenderN = 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

Female 495,000 (39%)

Male 774,000 (61%)

Ethnicity & SCI

Figure SixteenEthnic Identity Of Respondents Indicating They Have a SCI

N = 1,097,000

White/Caucasion 805,000 (77.1%)

Black/African American, 162,000

(15.6%)

Native American/Alaskan

Native 76,000 (7.3%)

Figure SeventeenEthnic Identity of Respondents With a Spinal Cord Injury

Compared to Ethnic Identity in the United States N (SCI) = 1,043,000

77.1% 74.1%

15.6%12.4%

7.3%

0.8%

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

White/Caucasion Black/African American Native American/Alaskan Native

Sample

Census


Hispanic StatusFigure 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

12.7% 14.8%

87.3% 85.2%

0%10%

20%30%40%50%

60%70%80%

90%100%

SCI US Census

Hispanic Not Hispanic


Household IncomeFigure Nineteen

Annual Household Income Of Respondents Who Report a Spinal Cord InjuryCompared to Annual Household Income in the United States

N (SCI) = 904,000

26.1%

15.5%

12.7%

8.4%

5.2%

8.9%

17.6%

11.5%

19.6%

7.6%6.1%

3.1% 2.2%

8.2%10.1%

7.0%5.8%

8.7%

5.6%

10.0%

0.0%

5.0%

10.0%

15.0%

20.0%

25.0%

30.0%

LESS THAN$10,000


$15,000


$20,000


$25,000


$30,000


$40,000


$50,000


$75,000


$100,000

$100,000OR MORE

People with SCI Census

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

Dissemination

Release on April 21/22

Press conference at National Press Club Capital Briefing

CDC Disability and Health Conference in New Orleans

Questions

Mr. Joe Canose

[email protected]

Dr. Anthony Cahill

(505) 272-2990

[email protected]



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