Overview of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system

The Journal of Spinal Cord Medicine, 2015 · DOI: 10.1179/2045772315Y.0000000023 · Published: January 1, 2015

Spinal Cord Injury Participation Patient Experience

Simple Explanation

The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI.

Study Duration

7 years

Participants

n = 877, multi-site sample and n = 245, individuals with traumatic SCI

Evidence Level

Not specified

Key Findings

1
The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL).
2
The SCI-QOL measurement system is comprised of 22 IRT-calibrated banks/scales across physical, emotional, and social functioning.
3
Each SCI-QOL item bank is constructed to include items across the entire continuum of ability within a HRQOL domain, and can be administered using CAT or SF, making test administration easier and more efficient.

Research Summary

The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the unmet need for relevant and psychometrically sound patient-reported outcome measures in spinal cord injury (SCI) rehabilitation. Using computer adaptive testing (CAT), the SCI-QOL builds on PROMIS and Neuro-QOL, offering 19 item banks and 3 fixed-length scales assessing physical, emotional, and social HRQOL. The SCI-QOL incorporates SCI-specific items and links to PROMIS and Neuro-QOL, enhancing data comparison and clinical utility.

Practical Implications

Clinical Assessment

The SCI-QOL can be used in clinical settings to identify and detect potential problems and to monitor symptoms in individuals with SCI.

Research Applications

The SCI-QOL can be utilized in research to document the initial impact of SCI, track recovery trajectories, and establish viable intervention and rehabilitation targets.

Policy Implications

The SCI-QOL measures may have policy-level implications, in terms of helping to derive the financial and HRQOL impact of SCI and its associated disability.

Study Limitations

1
The selection of subdomains was limited by the scope of discussions in focus groups, potentially overlooking important areas such as cognitive functioning.
2
The data provided in this issue provide only the initial validation and psychometric evidence.
3
Future work should include the development of a global/summary SCI-QOL score.

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