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

David S Tulsky, Pamela A Kisala, David Victorson, Denise G Tate, Allen W Heinemann, Susan Charlifue, Steve C Kirshblum, Denise Fyffe, Richard Gershon, Ann M Spungen, Charles H Bombardier, Trevor A Dyson-Hudson, Dagmar Amtmann, Claire Z Kalpakjian, Seung W Choi, Alan M Jette, Martin Forchheimer, David Cella, David S Tulsky, Pamela A Kisala, David Victorson, Denise G Tate, Allen W Heinemann, Susan Charlifue, Steve C Kirshblum, Denise Fyffe, Richard Gershon, Ann M Spungen, Charles H Bombardier, Trevor A Dyson-Hudson, Dagmar Amtmann, Claire Z Kalpakjian, Seung W Choi, Alan M Jette, Martin Forchheimer, David Cella

Abstract

Context/objective: 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. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue.

Design: Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n=877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n=245).

Setting: Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States.

Participants: Adults with traumatic SCI.

Interventions: n/a

Outcome measures: n/a

Results: 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).

Conclusion: The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

Keywords: Computer Adaptive Testing; Health-Related Quality of Life; Item Response Theory; Patient Reported Outcomes; Spinal Cord Injury.

Figures

Figure 1
Figure 1
Guidelines for selection of SCI-QOL bank administration method.

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