Pre-Release Briefing On
Prevalence of Paralysis In The
United States, 2008
The University of New Mexico  Health Sciences Center
SCHOOL 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
Jcanose@ChristopherReeve.org

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 AfricanAmericans

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

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 Consensus
Conference

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
“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
Neurofibromatosis
Muscular Atrophy
Guillain Barre Syndrome
Cerebral Palsy
Spina Bifida
ALS/Lou Gehrig’s
Syringomyelia
Post-Polio Syndrome
Transverse Myelitis
Fredrich’s Ataxia
Multiple Sclerosis
Poisoning
Epidural infection
Chiari malformation
Complications from surgery

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
Gender
State
Marital Status
Year Occurred
Person-Level Variables
Duration
Severity
Ethnicity
Hispanic Status
Age
Military-related
Education
Political Affiliation
Employment Status Metro.Status Code
Census Region and Division
Household-Level Variables
Income
Household Size & Composition
Own/Rent
Number of Telephone Lines

Initial Results For Paralysis

Prevalence
Figure One
Prevalence of Paralysis
Margin of Error: ± 3.91%
Range = 5,377,196 to 5,814,804 at 95% confidence interval
Reporting Some Form
Of Paralysis 5,596,000
(1.84%)
Not Reporting
Paralysis 298,632,000
(98.16%)

Causes
Figure Two
Causes of Paralysis
N= 5,596,000
Other 526,000 (9%)
Post-Polio Syndrome
272,000 (5%)
Stroke 1,608,000
(29%)
Cerebral Palsy
412,000 (7%)
Neurofibromatosis
212,000 (4%)
Traumatic Brain Injury
242,000 (4%)
Unspecified Birth
Defect 110,000 (2%)
Multiple Sclerosis
939,000 (17%)
Spinal Cord Injury
1,275,000 (23%)
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.

Age Distribution
Figure Three
Age Distribution for Respondents Indicating They are Paralyzed
N= 5,503,000
Mean Age : 52 years
Standard Deviation: 18 years
30%
24.4%
25%
22.8%
20%
15.2%
15%
11.9%
10%
5%
4.6%
6.6%
8.2%
6.4%
0%
0-19
20-29
30-39
40-49
50-59
60-69
70-79
80+

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

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
No Difficulty 94,000
(2%)
Completely Unable
903,000 (16%)
A Lot of Difficulty
2,043,000 (36%)
A Little Difficulty
921,000 (17%)
Some Difficulty
1,580,000 (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
Female
2,574,000 (46%)
Male 3,014,000
(54%)

Ethnicity & Paralysis
Figure Seven
Ethnic Identity Of Respondents Indicating They Are Paralyzed
N = 4,796,000
Other 40,000 (0.8%)
Native
Asian 15,000 (0.3%)
American/Alaskan
Native 176,000
(3.7%)
Two or More Races
7,000 (0.1%)
Black/African
American, 827,000
(17.2%)
White/Caucasion
3,731,000 (77.8%)

Ethnicity
Figure Eight
Ethnic Identity of Paralyzed Respondents Compared to Ethnic Identity in the
United States
N (Paralyzed) = 4,796,000
77.8%
80.0%
74.1%
70.0%
60.0%
50.0%
40.0%
Sample
Census
30.0%
17.2%
12.4%
20.0%
3.7%
10.0%
0.8%
0.3%
6.2%
4.4%
0.1%
2.1%
0.8%
0.0%
White/Caucasion
Black/African
American
Native
American/Alaskan
Native
Asian
Two or More Races
Other
Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of
the Census.

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
Hispanic
100%
Not Hispanic
87.9%
85.2%
80%
60%
40%
20%
12.1%
14.8%
0%
Paralysis
US Census
Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

Household Income
Figure Ten
Annual Household Income of Paralyzed Respondents Compared to
Annual Household Income in the United States
N (Paralyzed) = 4,075,000
People with Paralysis
Census
30.0%
25.0%
24.0%
19.6%
20.0%
17.6%
15.4%
15.0%
10.3%
10.0%
7.0%
5.0%
5.8%
11.5%
9.9% 10.0%
8.7% 9.5%
8.9%
5.6%
10.0%
6.3%
5.2%
4.7%
6.2%
3.7%
0.0%
LESS THAN $10,000 BUT $15,000 BUT $20,000 BUT $25,000 BUT $30,000 BUT $40,000 BUT $50,000 BUT $75,000 BUT $100,000
$10,000
LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN OR MORE
$15,000
$20,000
$25,000
$30,000
$40,000
$50,000
$75,000
$100,000
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

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
Paralysis Resulting
From Serving in the
Military
67,000 (7%)
Not-Military Related
896,000 (93%)

Initial Results For Spinal Cord Injury

Causes
Figure Twelve
Causes of Spinal Cord Injuries
N= 1,275,000
Other 76,000 (6%)
Natural Disaster 8,000
(1%)
Birth Defect 34,000
(3%)
Unknown/No
Response 109,000
(9%)
Motor Vehicle
Accident 311,000
(24%)
Victim of Violence
57,000 (4%)
Sporting/Recreation
Accident 206,000
(16%)
Fall, 112,000 (9%)
Accident Working
362,000 (28%)
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
35%
30.1%
30%
24.9%
25%
20%
15%
12.0%
11.5%
11.1%
10%
5%
5.7%
3.7%
1.0%
0%
0-19
20-29
30-39
40-49
50-59
60-69
70-79
80+

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

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
Female 495,000
(39%)
Male 774,000
(61%)

Ethnicity & SCI
Figure Sixteen
Ethnic Identity Of Respondents Indicating They Have a SCI
N = 1,097,000
Native
American/Alaskan
Native 76,000 (7.3%)
Black/African
American, 162,000
(15.6%)
White/Caucasion
805,000 (77.1%)

Figure Seventeen
Ethnic 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%
80.0%
70.0%
60.0%
50.0%
Sample
Census
40.0%
30.0%
15.6%
12.4%
20.0%
7.3%
0.8%
10.0%
0.0%
White/Caucasion
Black/African American
Native American/Alaskan Native
Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

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
Hispanic
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Not Hispanic
87.3%
85.2%
14.8%
12.7%
SCI
US Census
Census figures taken from the 2005-2007 American Community Survey Three-Year Estimates, U.S. Bureau of the Census.

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
People with SCI
Census
30.0%
26.1%
25.0%
19.6%
20.0%
17.6%
15.5%
15.0%
10.0%
5.0%
12.7%
8.7%
7.0%
5.8%
10.1% 10.0%
8.4%
5.6%
5.2%
3.1%
11.5%
8.9%
8.2%
7.6%
6.1%
2.2%
0.0%
LESS THAN $10,000 BUT $15,000 BUT $20,000 BUT $25,000 BUT $30,000 BUT $40,000 BUT $50,000 BUT $75,000 BUT $100,000
$10,000
LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN LESS THAN OR MORE
$15,000
$20,000
$25,000
$30,000
$40,000
$50,000
$75,000
$100,000
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

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
800-539-7309
JCanose@ChristopherReeve.org
Dr. Anthony Cahill
(505) 272-2990
ACahill@salud.unm.edu