The National Institute on Disability and Rehabilitation Research estimates 253,000 persons presently live with spinal cord injury (SCI) in the U. S. Incidence is approximately 40 per million, or 11,000 new cases per year. SCI affects life expectancy, occupational status, marital status and likelihood, and health-related quality of life. Lifetime costs range from approximately $500,000 for incomplete injury at age 50 to $3 million for high-level injury at age 25, without taking into account lost wages, productivity or informal care giving. Increasing life expectancy for persons with SCI makes improved characterization of health-related quality of life crucial to a full understanding of SCI impact on injured persons, their social circle, the health care system, and society. Judging the effectiveness of rehabilitation to improve independence and quality of life for those with SCI depends on measuring the full range of functional levels across all health aspects targeted by treatment. Current instruments are limited in conceptual clarity, and traditional methods limit their ability to balance measurement precision and acceptability. Therefore, instruments with necessary measurement properties are either too extensive for clinical use or serve a limited patient population. Instruments with a reasonable burden on patients and resources lack the precision required to detect treatment effects, monitor health, judge care quality, provide prognoses, or aid decision-making across the range of patient characteristics. The long-term objective of this project is to develop a superior outcome measurement instrument for SCI than is presently available using contemporary item response theory (IRT) and computer adaptive testing (CAT) methods.
The specific aims of are to: 1) field test the 'item pool', or collection of existing, revised, and newly designed questions to capture SCI status, 2) build the prototype 'SCI-CAT' instrument, and 3) conduct a pilot study of the SCI-CAT in SCI patients with various levels of injury severity. Upon completion, the SCI-CAT and related methods will be available for future clinical and research use. The SCI-CAT will enhance clinical, research, and policy decision-making by providing comprehensive information across the range of limitations affected by SCI while minimizing response burden and resource use.
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