Status of Persons with Spinal Cord Injury/Disease: HighlightsUnited Spinal Association is dedicated to enhancing the lives of all individuals with spinal cord injury or disease by

Status of Persons with Spinal Cord Injury/Disease:

Highlights

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Table of Contents

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .2

Key Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3

Symptomology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4

Utilization of Condition-Related Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

United Spinal Association Concept Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9

Treatment-Related Expectations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10

Effect of Condition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11

Home Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15

Respondent Outlook . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .16

Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20

Mission StatementUnited Spinal Association is dedicated to enhancing the lives of all individuals with spinal cord injuryor disease by ensuring quality health care, promoting research, advocating for civil rights andindependence, educating the public about these issues, and enlisting its help to achieve thesefundamental goals.

About UsUnited Spinal Association was founded in 1946 by veterans with spinal cord injuries, to enable members, aswell as others with disabilities, to lead full and productive lives. We participated in drafting the Americans withDisabilities Act and other civil rights laws, and continue to promote their enforcement. Our programs, includingadvocacy, sports and recreation, medical research, and accessibility services, are supported by your donations.

2

Introduction


The purpose of this study is to generate a better understanding of life with a spinal cord injury (SCI), multiplesclerosis (MS) or post-polio syndrome. To this end, findings will be publicly released to generate a platform ofdiscussion regarding issues faced by those with these conditions.

To meet this objective, Russell Research, an independent survey research provider (www.russellresearch.com),conducted interviews with 290 adults who have been diagnosed with one of the three conditions (132 withSCI, 104 with MS, and 54 with post-polio). For those with MS and Post-Polio, additional screening criteriawere applied to ensure that these respondents use a wheelchair all the time, most of the time or sometimes.With relatively homogenous groups such as these, the somewhat small samples reported herein are generallyacceptable for the purposes of survey research.

In terms of sampling, a multi-mode approach was utilized to maximize the opportunity for respondentparticipation. After being screened for participation via telephone, potential respondents were offered threepossible methods for completing the survey: completing the survey on the telephone at the time of screening,completing the survey via a paper questionnaire sent through the mail, or completing the survey on a secureWeb site via a provided link.

The survey was administered on a national basis from April 20 through May 7, 2004. Respondents werescreened randomly from lists of telephone numbers where it was reported that there was a household memberwith one of the conditions. The list of telephone numbers for those with MS was additionally cross-referencedagainst a list of households where it was indicated that a member had a wheelchair to improve the likelihoodof reaching someone who experiences some degree of physical immobility.

The total sample is weighted to reflect the actual proportion of the three subgroups relative to each––in otherwords, the universe of those with an SCI or a related disability (i.e., those with MS or post-polio who, to somedegree, need the use of a wheelchair). For the purposes of this report, in total, the three segments make up theSCI/D universe.

All samples are subject to some degree of sampling “error”––that is, statistical results obtained from a samplecan be expected to differ somewhat from results that would be obtained if every member of the targetpopulation were interviewed. At a 95 percent confidence level, a margin of sample error of +/- 6.2 percentapplies to the total sample. For the three specific subgroups, the margins of sample error are: +/- 9.8 percentfor those with SCI, +/- 9.8 percent for those with MS, and +/- 13.3 percent for those with Post-Polio.

The following statistical notations are used throughout the report: Indicates figure is significantly higherthan the indicated sub-group at a 95 percent confidence level (S = SCI, M = MS, P = post-polio).

3

Key Findings


The results of this survey indicate that despite significant challenges, persons with spinal cord injuries (SCIs),multiple sclerosis (MS), and Post-Polio Syndrome display strength of character and positive outlooks.Unfortunately, the clear need they have for community support and advocacy is currently unmet eitherbecause it is lacking or there is ineffective outreach.

The personal impact of SCI, MS, and post-polio is substantial. Pain, loss of employment and relationships, andsevere physical incapacities are very common results of these conditions.

Although respondents consider condition-related organizations valuable sources of information, unaidedawareness of SCI, post-polio and, to a lesser degree, MS-related organizations is extremely limited. In addition,the vast majority of those surveyed have never received assistance from a condition-related organization.

The majority of respondents (70 percent) feel that the concept of a United Spinal Association would beextremely or very helpful. Nearly 80 percent of persons with SCI feel that this is the case, and about 60% ofrespondents with MS or post-polio see a United Spinal Association as an extremely or very helpful resource.

As many as two-thirds of the respondents surveyed had experienced moderate to excruciating pain during theprior seven days. More than four out of ten had experienced severe or excruciating pain.

The majority of respondents (77 percent) agree that the Federal Government should pursue stem cell research.By comparison, however, only 25 percent feel the Federal Government should pursue therapeutic cloning.

In terms of mental health, over half of those surveyed with a SCI have been diagnosed with and treated fordepression. Just one-third of post-polio respondents have received mental health counseling.

Employment among respondents dropped from 80 percent prior to disability to only 20 percent at the time ofthe study. Among those who are no longer employed, at least part of the blame is placed on transportationdifficulties (48 percent). Most persons surveyed have made some changes to their residence to make it moreaccessible, yet persons with spinal cord injuries are less likely to do so.

Despite the impact of their injuries or conditions, many respondents still maintain remarkably positive outlookson life, have a clear sense of self-worth and tend to feel satisfied with personal relationships and activities.The vast majority of respondents (88 percent) indicate that they can still laugh and see the funny side of things.Roughly three out of four disagree strongly that they are no longer interested in their appearance (76 percent),that their lives are empty (69 percent), that people don’t enjoy spending time with them (68 percent) or that theyhave difficulty communicating with people (67 percent).

Despite their ability to maintain a positive outlook, respondents are realistic about the challenges faced bythose with their conditions. Almost nine out of ten agree that people with disabilities can be unfairlydiscriminated against at times. Six out of ten indicate that it is difficult for people with their condition to raisechildren. And, nearly half feel they will never be as successful or happy as they were before the injury or onsetof the condition.

Among those surveyed with a SCI or related disability who are currently in a relationship, the vast majority(86 percent) consider their current relationship with a spouse or partner to be good or excellent. At least halfof these respondents participate frequently in activities with that person.

Symptomology

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Based on their relative distributions versus each other in the general population, theinterviews completed for this study were weighted to the following proportions:

• Forty-five percent have a spinal cord injury (SCI).

• Thirty-six percent have multiple sclerosis (MS) and use a wheelchair at least sometimes.

• Nineteen percent have post-polio and use a wheelchair at least sometimes.

Please note, the total sample is weighted to reflect the actual proportion of the three subgroups relative to each—in other words, the universe of those with SCI or a related disability. For the purposes of this study, relateddisabilities are defined as those with MS or post-polio who, to some degree, need the use of a wheelchair. Intotal, the three segments make up the Spinal Cord Injury/Disease (SCI/D) universe.

Spinal Cord Injury45%

MultipleSclerosis

36%

Post-Polio 19%

Conditions (Weighted Distribution)


Utilization of Condition-Related Resources

For those with SCI, awareness of resources available to provide help and/orinformation regarding their condition is appallingly low.

• On an unprompted basis, the majority of respondents (73%) could not name even one organizationthat focuses on improving the lives of people with SCI.

• Of the many organizations that exist, unaided recall was very limited. The associations with thehighest recall were American Spinal Injury Association, Paralyzed Veterans of America, theAmerican Association of SCI Psychologists and Social Workers, and the two organizationssponsored by Christopher and Dana Reeve (all with unprompted recall levels of only 4 to 5 percent).

Unaided Awareness of Spinal Cord-Related Organizations

0

20

40

60

80

100

American SpinalInjury Assoc.

Paralyzed Veterans

of America

American Assoc. of SCI

Psychologists & Social Workers

Christopher & Dana Reeve

Paralysis Found.

Christopher & Dana Reeves Resource Ctr.

Spinal Cord Injury Ring

Spnial Cord Society

Nat'l. SCI Assoc.

SCI info. Network

Other Don't know/Refused/None

5 5 4 4 4 2 2 2 2

14

73

Base: Total Who Have/Care for Someone with a Spinal Cord Injury (n = 132)

Question: What organizations that focus on improving the lives of people with SCI are you aware of?

6

Utilization of Condition-Related Resources


Those surveyed with MS are significantly more likely to have received assistance orservices from an organization dedicated to their condition than people with SCI orpost-polio.

• Approximately four out of ten people with MS have received some type of assistance from anMS-related organization.

• The large majority of those with post-polio (83%) have not used any services provided byorganizations available to help them.

• Very few individuals with SCI (9%) have utilized the services offered by organizations geared towards helping those with their condition.

Whether or Not Have Received Assistance or ServicesFrom a Condition-Related Organization

Base: Total Who Have/Care for Someone with Condition

Question: Have you received any assistance or services from a [SCI/MS/post-polio] related organization?

0

20

40

60

80

100

SCI (n = 132) MS (n = 104) Post-Polio (n = 54)

ReceivedAssistance

Did Not ReceiveAssistance

917

38SP

91M

62

83M

United Spinal Association Concept Evaluation


“Arising from our belief in the inalienable right of all individuals to enjoy freedom, United SpinalAssociation offers programs and services that enable people with spinal cord disabilities to lead richer,more fulfilling lives. We are committed to reaching this fundamental objective by helping to assurequality health care, promoting research, advocating for civil rights and independence, educating thepublic about these issues and enlisting their help.”

Based on the above description, the large majority of respondents with SCI indicatethey think this new organization could help them; only one-third however report theywould be interested in becoming a member.

• Seventy-nine percent of those with SCI thought this new organization could help them, significantlyhigher than those with MS (63%) or post-polio (59%).

• Only two or three out of ten respondents, however, would be interested in membership.

Helpfulness of Organization and Interest in MembershipBase: Total Who Have/Care for Someone with Condition

Question: How interested would you be in becoming a member of United Spinal Association?

Question: How helpful do you think this organization would be to someone with [a SCI/MS/post-polio]?

0%

20%

40%

60%

80%

100%

Total (n = 290) SCI (n = 132) MS (n = 104) Post-Polio (n = 54)

Don’t know/refused

Not at all helpful

Not very helpful

Somewhat helpful

Very helpful

Extremely helpful

32

38

24

4

39

40

18

3

25

38

28

4

28

31

31

456

M

70 63 59

S S

79 MP

0%

20%

40%

60%

80%

100%


Don’t know/refused

Not at all interested

Not very interested

Somewhat interested

Very interested

Extremely interested

8

39

14

15

2723

43

9

12

30 16

37

18

18

2415

31

18

6

2619

5 6

7

3

8

19

11

S

United Spinal Association Concept Evaluation


Joining United Spinal Association is driven by a desire for information.

• Half of those respondents who indicated interest in joining this new organization are looking forinformation. Specifically, when asked why they were interested, respondents stated they are hopingfor information that might help improve their lives (23%) or just be helpful (12%).

• One out of ten (11%) also mentioned the organization could potentially help them help other people.

Total SCI MS Post-PolioTotal Extremely/Very Interested in United Spinal Association (78) (39)* (25)* (14)*

% % % %

POSITIVE (GRAND NET) 83 82 84 86

Information Provided (Net) 49 52 36 64Might help me improve my life 23 25 20 21Helpful information/might help me 12 11 12 14Want/need any information I can get 5 3 4 14Might be informative/educational 3 3 0 7Want to know new treatments 3 5 0 0All other information provided mentioned 4 7 0 0

Positive MiscellaneousI can help people/want to help other people 11 13 12 0Need more research on it 4 0 8 7Have spinal related problems/injuries 3 3 4 0Like to keep up with people things 2 0 8 0Would meet my needs 2 0 4 7All other positive miscellaneous mentioned 8 1 0 4

Reasons for Interest In Membership

Question: Why are you interested in joining the United Spinal Association?

* Caution: Small base size.

Treatment


More than four out of ten respondents in this study had severe or excruciating pain inthe seven days prior to being interviewed.

• Two-thirds of the respondents had at least moderate pain during the past week.

• Respondents with SCI have the most pain, with as many as half indicating that they were in severeor excruciating pain during the week prior to being interviewed.

Severity of Pain ExperiencedBase: Total Who Have/Care for Someone with Condition

Question: How would you rate the severity of any pain you have experienced during the last seven days?

0%

20%

40%

60%

80%

100%


Don't know/refused

Have not experienced pain

Mild

Discomforting

Moderate

Severe

Excruciating

16

28

22

11

32

23

11

4

12

28

19

6

13

17

26

13

2

P

4451

4030

S

S

16

52

19

83

21

1

3

28S

11


Treatment-Related Expectations

A large majority of respondents agree that stem cell research is a good idea; this is nottrue, however, when it comes to therapeutic cloning.

• About eight out of ten respondents agree that the Federal Government should pursue stemcell research.

• Only one quarter of those interviewed feel the Federal Government should pursuetherapeutic cloning.


Question: And how strongly do you agree or disagree that the Federal Government should pursue therapeutic cloning?

Question: How strongly do you agree or disagree that the Federal Government should pursue stem cell research?

Reaction Toward Stem Cell Research and Therapeutic Cloning

0%

20%

40%

60%

80%

100%


Don't know/refused

Strongly disagree

Disagree

Neither agree nor disagree

Agree

Strongly agree47

30

11

5

47

29

13

5

50

9

30

3

43

32

7

457

77 76 80 75

52 5

1 3

7

0%

20%

40%

60%

80%

100%


Don't know/refused

Strongly disagree

Disagree

Neither agree nor disagree

Agree

Strongly agree

14

28

23

25

14

25

19

31 10

12

32

28

19

9

32

24

9

2412

11 13

17

9

9 15

1212

11


Effect of Condition

Nearly two-thirds of respondents with SCI or MS have been diagnosed with depression.

• Compared to those with post-polio (33%), about twice as many respondents with SCI (60%) orMS (64%) have been diagnosed with depression.


Question: Have you been diagnosed with depression at any time since [your SCI/the onset of your MS/the onset ofyour post-polio]?

Depression Diagnosis

0%

20%

40%

60%

80%

100%

Total (n=290) SCI (n=132) MS (n=104) Post-Polio (n=54)

Have not been diagnosed

Have been diagnosed

57

43

60

36

33

P

4067

SM

64P


Effect of Condition

Compared to the proportion diagnosed with depression, fewer respondents haveactually received mental health counseling.

• While half of those respondents with SCI (49%) have received mental health counseling, a minorityof those with MS (37%) report that they have, while fewer of those with post-polio (19%) indicatethis is the case.


Question: Have you ever received mental health counseling because of your [SCI/MS/post-polio]?

Mental Health Counseling

80%

100%

51

0%

20%

40%

60%

Total (n=290) SCI (n=132) MS (n=104) Post-Polio (n=54)

Have not received mentalhealth counseling

Have ever received mentalhealth counseling

39

61

49

63

19

P

81

SM

37P


Effect of Condition

Respondents with SCI, MS or post-polio are significantly less likely to be employedsince their injuries or the onset of their conditions.

• The vast majority of respondents with SCI (91%) report that they were employed at least part timeprior to their injury. At the time of the survey, only one-third report being currently employed.

• Approximately seven out of ten of those surveyed with MS or post-polio were employed prior tousing a wheelchair. Less than 15% of either group indicated they were currently employed at thetime of the survey.


Questions: What is your current employment status?Were you employed before [your SCI/the symptoms of your “MS”/“Post-Polio”] reached a point whereyou needed the use of a wheelchair?

Employment: Currently and Prior to Condition

0

20

40

60

80

100

Employed prior to condition

Currently employed

20

80

33

13

91

6

7468

Total SCI MS Post-Polio(n = 232) (n = 290) (n = 87) (n = 132) (n = 104) (n = 98) (n = 54) (n = 47)


Effect of Condition

Approximately half of the unemployed respondents with SCI and MS indicated thattransportation issues have contributed to their lack of employment.

• Transportation is less of an issue for those surveyed with post-polio, with only one-third indicatingthat their unemployment is due, at least in part, to difficulties in getting from their home to a placeof employment.

Base: Total Who Are Unemployed

Question: Would you say that you are currently unemployed at least in some part because getting from where youlive to a place of employment would be difficult for you?

Unemployment Related to Transportation Difficulties

0%

20%

40%

60%

80%

100%

Total (n = 232) SCI (n = 87) MS (n = 98) Post-Polio (n = 47)*

Difficulty getting there is not a factor in unemployment

Not employed in part becausegetting there would be difficult

48

52

49

47

36

51

64

53


Home Life

Many respondents with SCI, MS or post-polio have had to add ramps and handrails orremodel bathrooms in order to make their homes more accessible.

• Those with post-polio or MS are most likely to have added ramps or handrails in their homes orremodeled their bathrooms. Those with SCI are comparatively less likely to report having madepermanent renovations to their homes versus respondents from the other subgroups.


Question: Which of the following types of changes or additions did you make to your home to make it moreaccessible [because of your SCI/because your MS/post-polio reached a point where you neededthe use of a wheelchair]?

Changes Made to Home

0

20

40

60

80

100

Ramps Handrails Remodeledbathroom

Transfer lifts Remodeledkitchen

Widened doors Special bed Other None


46

31

53

72

42

31

5350

34

27

4043

15

9

18

22

14 13 13

19

32

4 42 3 2 2

5 5 47

32

22

17

45

SP

S

S

S S

S

MP


Respondent Outlook

Respondents maintain positive outlooks on life.

• More than half the respondents disagree or strongly disagree that they are no longer interestedin their appearance, that their lives are empty, that people don’t enjoy spending time with them,that they have difficulty communicating with others, that the future looks bleak, and that theyfeel isolated.

• Those with post-polio have a significantly more positive outlook on three of the below dimensions.


Question: Please tell me whether you agree, strongly agree, disagree, strongly disagree or neither agree nor disagreethat each of following statements describes your personal experiences or feelings during the past 30 days.

General Attitudinal Profile

Percentage of Those Who Disagree/Strongly Disagree with Following Statements

0 2 0 40 60 80 100

I feel isolated

The future looks bleak

I have difficulty communicating with other people

People don’t really enjoyspending time with me

I feel that my life is empty

I am no longer interested in myappearance or the way look

76

SM

7278

83

6965

7276

6864

6585

6764

6387

5854

5774

5653

5565

SM

SM



Respondent Outlook

Even though they maintain positive outlooks, respondents are realistic about thechallenges they face.

• The vast majority agree that people with disabilities can be unfairly discriminated against.

• Respondents also largely recognize that their condition makes it hard for them to work and couldmake it difficult for them to raise children.

• As many as one half of those with MS or SCI report they have lost a job because of theirconditions. Similarly, it is at least somewhat common for respondents from these subgroups toindicate feeling that they will never feel as successful or happy as they were before the injury orthe onset of their conditions.


Question: Please tell me whether you agree, strongly agree, disagree, strongly disagree or neither agree nordisagree with each of the following statements.

Condition-Related Attitudes

0 2 0 40 60 80 100

I have lost a job becauseof my condition

I will never be as successful or happy as I was before the injury/

onset of the condition

It can be difficult for people withthe condition to raise children

I have not been able to workbecause of my condition

At times, people who are disabledcan be unfairly discriminated against

88M

8291

71

85

48

61

91

5659

70

46

28

66

4450

4820

P

SP

57 P

46 P

P

P


Percentage of Those Who Agree/Strongly Agree with Following Statements


Respondent Outlook

Respondents engage in a wide variety of social activities. There does, however,appear to be some degree of isolation present in terms of their relationships withmembers of their communities.

• Nine out of ten left their home within the past month.

• Seven or eight out of ten spent some time with their friends.

• Shopping and dining out were also enjoyed by a majority of respondents.

• To a lesser degree, respondents also spent time exercising and traveling.

• Only a minority (34%) indicate they participate in activities with members of their communities.


Question: Which of the following choices describe activities that you have participated in during the past 30 days?

Activities Participated in During the Past 30 Days

0

20

40

60

80

100

Left your homefor any purpose

Spent time with friends

Shopped Dined out Exercised Traveledsomewhere

Paricipated inactivities with

member of yourcommunity

Went to a movieor show

None of theabove


83

9092

89 89

7880

7174

64

81

72

6461

62

50

56

50

35

4037

39

52

34

40

21

44

23 2219

33

2

M80 M

M M

2 40


Respondent Outlook

Among those with a spouse or partner, respondents are generally very happy with theirrelationships and the support they receive and can provide in return.

• Those surveyed with post-polio are most likely to feel that their partner is the most importantperson in their life (89%) and the least likely to feel any problems exist between them and theirsignificant other (my relationship with my partner needs work—22%, I sometimes think my partnerwould be better off without me—22%; I am a burden to my partner—17%, there have been timeswhen I felt uncomfortable going out in public with my partner—8%).

• Six out of ten (59%) of those with SCI report their relationships with their spouses or partners needwork—a proportion significantly higher than what was found among the other two respondent cells.

Base: Total Who Are Currently in a Relationship

Question: Please tell me whether you strongly agree, agree, disagree, strongly disagree or neither agree nor disagree that eachof the following statements describes your current relationship with your spouse or partner during the past 30 days.

* Caution: Small base size.

Perceptions of Relationships

0

20

40

60

80

100

My spouse/partner enjoys being

around me

When they need it, I am able to provide

the support my spouse/partner needs

I have been confident that my spouse/

partner is sexually faithful to me

I am confident that I am going to continue

to have a close relationship with my spouse/partner that

will last both ourlifetimes

In the face of recentchallenges, my

spouse/partner hasbeen supportive in

ways I would not havethought were possible

at times in the past

My spouse/partner does things thatplease me when we are intimate

My spouse/partner is the single mostimportant person

in my life

I have felt dependenton my spouse/partner

8587 85 8894

86 8692 91

8186

82 80

9288 8882 81

8882 787675

697575

8278

69

89

76

85

S

0

20

40

60

80

100

I am able to keep my spouse/partner

sexually fulfilled

My relationship with my spouse/partner

needs work

I sometimes think myspouse/partner would be

better off without me

I am a burden to myspouse/partner

There have been timeswhen I felt uncomfortable

going out in public withmy spouse/partner

Romance with myspouse/partner is a thing of the past

I no longer enjoy being intimate with my spouse/partner

39

58 61

50

67

46

59

22

39

22

38

44

36

17

4032

2832

202017

21

8 8

171012

34

MP

PP P

PP

Total (n=193) SCI (n=85) MS (n=72) Post-Polio (n=36)*

Percentage of Those Who Agree/Strongly Agree with Following Statements


Notes

2005 United Spinal AssociationJob # 2005-0329-001

Additional Offices

P.O. Box 42938Philadelphia, PA 19101-29381.800.807.0190

130 South Elmwood AvenueSuite 641Buffalo, NY 14202-24871.800.807.0191

245 West Houston StreetNew York, NY 100141.800.807.0192

734 15th Street NW, Tenth FloorWashington, DC 20005202.331.1002

United Spinal Association75-20 Astoria BoulevardJackson Heights, NY 11370-1177

Tel 718 803 3782Fax 718 803 0414www.unitedspinal.org

Expanding Opportunities for Veterans and All Paralyzed Americans

Documents

Status of Persons with Spinal Cord Injury/Disease: HighlightsUnited Spinal Association is dedicated to enhancing the lives of all individuals with spinal cord injury or disease by