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The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system: Development, psychometrics, and item bank calibration

D. Tulsky,Pamela A. Kisala

Published 2015 in Journal of Spinal Cord Medicine (JSCM)

ABSTRACT

Though spinal cord injury (SCI) was historically regarded as an ailment not to be treated,1 medical, pharmaceutical, and technological advances in the 20th and 21st centuries have improved acute and long-term SCI rehabilitation outcomes. Consequently, SCI has become an increasingly common cause of long-term disability, with over 250 000 Americans2,3 and over 85 000 Canadians4 living with SCI. Traumatic SCI is a catastrophic injury that changes the lives of individuals in a split second. SCI is characterized by a broad and unique set of functional limitations and secondary complications that affect physical (e.g. altered urinary and bowel function,5–7 pressure ulcers,8,9 chronic and neuropathic pain) cognitive,10,11 emotional (e.g. depression,12,13 anxiety disorders),14 and social (e.g. unemployment)15 areas of health and functioning. Individuals who sustain SCI must adjust immediately to a new way of life that is often characterized by significant physical limitations, alterations to basic physiological functions, intense emotions, disruption of social relationships, and barriers to participating in their usual activities – essentially, every possible area of health-related quality of life (HRQOL). Individuals with SCI have described the secondary complications of SCI to be equally or even more troublesome than the primary functional limitations of SCI, such as the inability to walk.16 Furthermore, SCI is heterogeneous because the associated functional impairments and secondary medical issues are directly related to the location and neurological completeness of injury. An individual who sustains an American Spinal Injury Association (ASIA) Impairment Scale (AIS) grade D injury may be able to walk unassisted, while an individual with high-level and complete (AIS grade A) tetraplegia will be unable to move below the neck and will require constant mechanical ventilation. Due to the suddenness and severity of SCI, the wide range of potential secondary complications, and the diversity of functioning and complications within the population of individuals with SCI, healthcare professionals must assess a wide variety of areas of functioning, examine changes over time, and identify and mitigate potential risk factors. To do so, the healthcare provider must be able to measure and monitor a wide variety of issues that a person with SCI might experience. Until now, there have not been the proper tools to do so.

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