Background: To better understand service-related needs and the current situation of persons with spinal cord injury (SCI) living in the community, a more comprehensive approach for studying their interrelationships (needs vs community living outcomes) is greatly needed. Objective: To describe the development, design, and findings of a Canadian survey portraying the life situation of people with SCI. Method: The SCI Community Survey covers demographics, health, SCI-specific needs, community participation, employment, quality of life, health care utilization, and overall health rating. A total of 1,549 persons with SCI completed the survey (Web or phone) between May 2011 and August 2012. Results: Some major expressed needs for services to support community living are met to a great extent for a substantial proportion of people with SCI. Complications remain highly prevalent for some health issues, including pain, sexual dysfunction, and musculoskeletal disorders. The extent of community participation based on values and preferences varies tremendously among daily activities and social roles. Some dimensions of quality of life are rated positively (eg, family life) while others are greatly disrupted (eg, sex life and physical health). Most of these findings vary significantly between people with traumatic and nontraumatic lesions. Conclusion: This survey is the first in Canada and among the first worldwide to draw a comprehensive picture of major aspects of the lives of people with SCI including service needs. The results will help to determine the links between various aspects of community living and guide service providers and policy makers in focusing on major issues to enhance quality of life after SCI.
United Nations Convention on the Rights of Persons with Disabilities. http://www.un.org/disabilities/convention/conventionfull.shtml2006. http://www.un.org/disabilities/convention/conventionfull.shtml2006.
World Health Organization. World report on disability. http://www.who.int/disabilities/world_report/2011/report/en/2011. http://www.who.int/disabilities/world_report/2011/report/en/2011.
Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Arch Phys Med Rehabil. 2002;83(8):1052–1059.
,
Measuring unmet needs and services among persons with traumatic brain injury
, Arch Phys Med Rehabil.
, vol. 83
(pg. 1052
-1059
) Kennedy P, Lude P, Taylor N. Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples. Spinal Cord. 2006;44(2):95–105.
,
Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples
, Spinal Cord.
, vol. 44
(pg. 95
-105
) Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clin Rehabil. 2001;15(6):600–606.
,
The need for a multidisciplinary outreach service for people with spinal cord injury living in the community
, Clin Rehabil.
, vol. 15
(pg. 600
-606
) Rick Hansen Man-in-Motion Foundation (RHMIMF). SCI Community Survey overall results. Ipsos Reid. 2004:56.
,
SCI Community Survey overall results
, Ipsos Reid.
, vol. 56
Rick Hansen Man-in-Motion Foundation (RHMIMF). SCI Forum report. Ipsos Reid. 2005:66.
,
SCI Forum report
, Ipsos Reid.
, vol. 66
Barker RN, Kendall MD, Amsters DI, Pershouse KJ, Haines TP, Kuipers P. The relationship between quality of life and disability across the lifespan for people with spinal cord injury. Spinal Cord. 2009;47(2):149–155.
,
The relationship between quality of life and disability across the lifespan for people with spinal cord injury
, Spinal Cord.
, vol. 47
(pg. 149
-155
) Noreau L, Fougeyrollas P. Long-term consequences of spinal cord injury on social participation: The occurrence of handicap situations. Disabil Rehabil. 2000;22(4):170–180.
,
Long-term consequences of spinal cord injury on social participation: The occurrence of handicap situations
, Disabil Rehabil.
, vol. 22
(pg. 170
-180
) Cardol M, de Jong BA, van den Bos GA, Beelem A, de Groot IJ, de Haan RJ. Beyond disability: Perceived participation in people with a chronic disabling condition. Clin Rehabil. 2002;16(1):27–35.
,
Beyond disability: Perceived participation in people with a chronic disabling condition
, Clin Rehabil.
, vol. 16
(pg. 27
-35
) Larsson Lund M, Nordlund A, Nygard L, Lexell J, Bernspang B. Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury. J Rehabil Med. 2005;37(1):3–8.
,
Perceptions of participation and predictors of perceived problems with participation in persons with spinal cord injury
, J Rehabil Med.
, vol. 37
(pg. 3
-8
) Post MW, de Witte LP, van Asbeck FW, van Dijk AJ, Schrijvers AJ. Predictors of health status and life satisfaction in spinal cord injury. Arch Phys Med Rehabil. 1998;79(4):395–401.
,
Predictors of health status and life satisfaction in spinal cord injury
, Arch Phys Med Rehabil.
, vol. 79
(pg. 395
-401
) Noreau L, Cobb J, Belanger LM, Dvorak MF, Leblond J, Noonan VK. Development and assessment of a community follow-up questionnaire for the Rick Hansen Spinal Cord Injury Registry. Arch Phys Med Rehabil. 2013;94(9):1753–1765.
,
Development and assessment of a community follow-up questionnaire for the Rick Hansen Spinal Cord Injury Registry
, Arch Phys Med Rehabil.
, vol. 94
(pg. 1753
-1765
) Fugl-Meyer AR, Melin R, Fugl-Meyer KS. Life satisfaction in 18- to 64-year-old Swedes: In relation to gender, age, partner and immigrant status. J Rehabil Med. 2002;34(5):239–246.
,
Life satisfaction in 18- to 64-year-old Swedes: In relation to gender, age, partner and immigrant status
, J Rehabil Med.
, vol. 34
(pg. 239
-246
) Statistic Canada. Canadian Community Health Survey (CCHS)-Cycle 3.1. 2005. http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey& SurvId=1630&InstaId=22642&SDDS=3226 http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey& SurvId=1630&InstaId=22642&SDDS=3226
Ware J Jr, Kosinski M, Keller SD. A 12-Item Short- Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–233.
,
A 12-Item Short- Form Health Survey: Construction of scales and preliminary tests of reliability and validity
, Med Care.
, vol. 34
(pg. 220
-233
) DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Arch Phys Med Rehabil. 2011;92(3):332–338.
,
Trends in new injuries, prevalent cases, and aging with spinal cord injury
, Arch Phys Med Rehabil.
, vol. 92
(pg. 332
-338
) Statistics Canada, Canadian Community Health Survey (CCHS). 2010. http://www23.statcan.gc.ca/imdb-bmdi/document/3226_D7_T9_V8-eng.htm http://www23.statcan.gc.ca/imdb-bmdi/document/3226_D7_T9_V8-eng.htm
Kennedy P, Sherlock O, McClelland M, Short D, Royle J, Wilson C. A multi-centre study of the community needs of people with spinal cord injuries: The first 18 months. Spinal Cord. 2010;48(1):15–20.
,
A multi-centre study of the community needs of people with spinal cord injuries: The first 18 months
, Spinal Cord.
, vol. 48
(pg. 15
-20
) Beauregard L, Guindon A, Noreau L, Lefebvre H, Boucher N. Community needs of people living with spinal cord injury and their family. Top Spinal Cord Inj Rehabil. 2012;18(2):122–125.
,
Lefebvre H, Boucher N. Community needs of people living with spinal cord injury and their family
, Top Spinal Cord Inj Rehabil.
, vol. 18
(pg. 122
-125
) Hammell KRW. Spinal cord injury rehabilitation research: Patient priorities, current deficiencies and potential directions. Disabil Rehabil. 2010;32(14):1209–1218.
,
Spinal cord injury rehabilitation research: Patient priorities, current deficiencies and potential directions
, Disabil Rehabil.
, vol. 32
(pg. 1209
-1218
) Hitzig SL, Campbell KA, McGillivray CF, Boschen KA, Craven BC. Understanding age effects associated with changes in secondary health conditions in a Canadian spinal cord injury cohort. Spinal Cord. 2010;48(4):330–335.
,
Understanding age effects associated with changes in secondary health conditions in a Canadian spinal cord injury cohort
, Spinal Cord.
, vol. 48
(pg. 330
-335
) Hetz SP, Latimer AE, Arbour-Nicitopoulos KP, Martin Ginis KA. Secondary complications and subjective well-being in individuals with chronic spinal cord injury: Associations with self-reported adiposity. Spinal Cord. 2011;49(2):266–272.
,
Secondary complications and subjective well-being in individuals with chronic spinal cord injury: Associations with self-reported adiposity
, Spinal Cord.
, vol. 49
(pg. 266
-272
) Levi R, Hultling C, Nash MS, Seiger A. The Stockholm spinal cord injury study: 1. Medical problems in a regional SCI population. Paraplegia. 1995;33(6):308–315.
,
The Stockholm spinal cord injury study: 1. Medical problems in a regional SCI population
, Paraplegia.
, vol. 33
(pg. 308
-315
) Ataoglu E, Tiftik T, Kara M, Tunc H, Ersoz M, Akkus S. Effects of chronic pain on quality of life and depression in patients with spinal cord injury. Spinal Cord. 2013;51(1):23–6
,
Effects of chronic pain on quality of life and depression in patients with spinal cord injury
, Spinal Cord.
, vol. 51
(pg. 23
-6
) Budh CN, Osteraker AL. Life satisfaction in individuals with a spinal cord injury and pain. Clin Rehabil. 2007;21(1):89–96.
,
Life satisfaction in individuals with a spinal cord injury and pain
, Clin Rehabil.
, vol. 21
(pg. 89
-96
) Modirian E, Pirouzi P, Soroush M, Karbalaei-Esmaeili S, Shojaei H, Zamani H. Chronic pain after spinal cord injury: Results of a long-term study. Pain Med. 2010;11(7):1037–1043.
,
Chronic pain after spinal cord injury: Results of a long-term study
, Pain Med.
, vol. 11
(pg. 1037
-1043
) Werhagen L, Hultling C, Molander C. The prevalence of neuropathic pain after non-traumatic spinal cord lesion. Spinal Cord. 2007;45(9):609–615.
,
The prevalence of neuropathic pain after non-traumatic spinal cord lesion
, Spinal Cord.
, vol. 45
(pg. 609
-615
) Anderson KD, Borisoff JF, Johnson RD, Stiens SA, Elliott SL. The impact of spinal cord injury on sexual function: Concerns of the general population. Spinal Cord. 2007;45(5):328–337.
,
The impact of spinal cord injury on sexual function: Concerns of the general population
, Spinal Cord.
, vol. 45
(pg. 328
-337
) Krause JS, Saunders LL. Health, secondar y conditions, and life expectancy after spinal cord injury. Arch Phys Med Rehabil. 2011;92(11):1770–1775.
,
Health, secondar y conditions, and life expectancy after spinal cord injury
, Arch Phys Med Rehabil.
, vol. 92
(pg. 1770
-1775
) Noreau L, Fougeyrollas P, Post M, Asano M. Participation after spinal cord injury: The evolution of conceptualization and measurement. J Neurol Phys Ther. 2005;29(3):147–156.
,
Participation after spinal cord injury: The evolution of conceptualization and measurement
, J Neurol Phys Ther.
, vol. 29
(pg. 147
-156
) Gray DB, Hollingsworth HH, Stark SL, Morgan KA. Participation survey/mobility: Psychometric properties of a measure of participation for people with mobility impairments and limitations. Arch Phys Med Rehabil. 2006;87(2):189–197.
,
Participation survey/mobility: Psychometric properties of a measure of participation for people with mobility impairments and limitations
, Arch Phys Med Rehabil.
, vol. 87
(pg. 189
-197
) Hammel J, Magasi S, Heinemann A, Whiteneck G, Bogner J, Rodriguez E. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil. 2008;30(19):1445–1460.
,
What does participation mean? An insider perspective from people with disabilities
, Disabil Rehabil.
, vol. 30
(pg. 1445
-1460
) Lund ML, Nordlund A, Bernspang B, Lexell J. Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury. Disabil Rehabil. 2007;29(18):1417–1422.
,
Perceived participation and problems in participation are determinants of life satisfaction in people with spinal cord injury
, Disabil Rehabil.
, vol. 29
(pg. 1417
-1422
) Hammell KW. Exploring quality of life following high spinal cord injury: A review and critique. Spinal Cord. 2004;42(9):491–502.
,
Exploring quality of life following high spinal cord injury: A review and critique
, Spinal Cord.
, vol. 42
(pg. 491
-502
)
This content is only available as a PDF.
