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.

A Life Course Perspective to Spinal Cord Injury and Employment Participation in Canada

“…Several additional limitations are discussed in the first article in this issue. 32 Overall, this study contributes to an important body of literature highlighting the challenges people with SCI face in finding and maintaining employment and several important life phase differences. In addition to a notable relationship between social role participation and employment in all study participants, findings call attention to the importance of reducing unmet SCI needs in the young/middle-aged life phases and underscore the requirement for developing strategies to delay premature retirement in older ages.…”

“…32 This included 959 young/middle-aged respondents (18- [2.9]). A majority of participants completed an Internet-based questionnaire that collected information on demographic variables, injury characteristics, and health factors.…”

Health Care Utilization in Persons with Traumatic Spinal Cord Injury: The Importance of Multimorbidity and the Impact on Patient Outcomes

“…Details of the study methodology are described elsewhere. 9 To be included in the survey, individuals had to be at least 18 years of age, understand English or French, have sustained a traumatic or nontraumatic SCI, and have been living in the community for at least 1 year. For the purpose of this study, only persons with a traumatic mechanism of injury were included.…”

Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey

“…Since subgroups may not be of equal size, the consequences of variations in the relative size of two comparative samples were considered for sample size calculation (Table 2). 8,16 For subgroups of equal size, sample sizes vary between 74 and 194 and are moderately sensitive to size ratio.…”