Spinal cord injury community survey: a national, comprehensive study to portray the lives of canadians with spinal cord injury

Abstract

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.

Keywords: SCI-related needs; community living; quality of life; secondary health conditions; social participation; spinal cord injury.

Figure 1.. Comparisons between survey data and those of the US SCI Model Systems (from DeVivo and Chen 2011).

Figure 2.. Bar graphs representing the variation in the extent of participation in 26 activities in participants with a traumatic or nontraumatic lesion (data sorted by activities in decreasing order of percentage of participants with a traumatic lesion, responding “Yes - as much as I want”). Dashed lines represent the mean proportion of participants who responded “Yes - as much as I want” across the 26 items. ^† Sig. = significant difference between traumatic and nontraumatic lesion determined by chi-square test. *P ≤ .05; **P ≤ .01; ***P ≤ .001; NS = not significant.

Figure 3.. Occurrence of secondary health complications in the previous 12 months for participants with a traumatic or nontraumatic SCI. Significant difference between traumatic and nontraumatic lesion determined by chi-square test. * P ≤ .05; ** P ≤ .01; *** P ≤ .001.

Figure 4.. Bar graphs of the satisfaction with life domains as measured by the Life Satisfaction Questionnaire (LiSAT-11) and a single question rating overall quality of life in participants with a traumatic or nontraumatic SCI. Significant difference between traumatic and nontraumatic lesion determined by chi-square test. * P ≤ .05; ** P ≤ .01; NS = not significant.