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Spinal Cord Injury - Quality of Life (SCI-QOL)
Availability
PDF copies of all SCI-QOL item banks and short forms are freely available to the public by contacting SCI-QOL@udel.edu. The SCI-QOL CATs and short forms are included in the fee-based Assessment CenterSM online platform; access to these measures within Assessment Center must be granted through SCI-QOL@udel.edu. All SCI-QOL CATs and short forms are also available in the public REDCap library. Public REDCap measures are available at no additional cost to users with institutional access to REDCap. SCI-QOL CATs and short forms are also included in the NIH Toolbox and NIH PROMIS iPad applications; an annual license fee is required for these applications.
Classification
Supplemental: Spinal Cord Injury (SCI)
Short Description of Instrument
The SCI-QOL measurement system was developed with funding from the National Institutes of Health (National Institute of Child Health and Human Development /National Center for Medical Rehabilitation Research and the National institute of Neurological Disorders and Stroke) and the National Institute on Disability, Independent Living, and Rehabilitation Research to develop and validate a multifaceted system of measuring patient reported outcomes across a wide variety of functioning specifically targeted for individuals with SCI. Evaluation of the sentivity and responsiveness is currently underway.
 
The measures were developed following all PROMIS standards for patient reported outcomes (PRO) measure development. Twenty-two areas of functioning are measured through Computer Adaptive Tests (CATs) and/or fixed-length short forms (SF). Some scales are unique to the needs of individuals with SCI (e.g., Resilience, Grief/Loss, Independence) while other scales used PROMIS and Neuro-QOL items but recalibrated scores to optimize assessment within an SCI population (e.g., Pain Interference, Depression, Anxiety). These latter scores are linked directly to the PROMIS (PROMIS Instrument Link) or the Neuro-QOL measurement system (Neurological Quality of Life Instrument Link to allow for direct comparison with PROMIS and Neuro- QOL scores except item administration has been enhanced for individuals with SCI.
 
Comments/Special Instructions
Administration: Computer adaptive test (CAT) or short forms (SF). Currently, CATs are available through the public REDCap instrument library, the NIH PROMIS and NIH Toolbox iPad applications, and the web-based Assessment Center platform (www.assessmentcenter.net; contact SCI-QOL@udel.edu for access). SFs may be administered by paper and pencil, through REDCap,  through the NIH PROMIS and NIH Toolbox iPad apps, on Assessment Center, or may be entered into and administered through alternate electronic data capture systems.
 
Time: Variable depending on the number of domains assessed; CATs average 7 items (~2 minutes) each and SFs average 9 items (~3 minutes) each.
 
Ages: SCI-QOL measures were calibrated with adults only (ages 18 and older)
 
Cost: Free to investigators/clinicians who sign a use agreement (available from SCI-QOL@udel.edu). REDCap is freely available to individuals affiliated with subscribing institutions. The NIH PROMIS and NIH Toolbox iPad applications and Assessment Center online platform require an annual license fee.
 
Languages: Most SCI-QOL measures are available in English only. The SCI-QOL Independence SF8a, Bladder Management Difficulties SF8a, and Bladder Complications Scale are also available in French and Spanish. Contact SCI-QOL@udel.edu to access the French and Spanish translations.
Scoring
Standard scores are provided on a T metric (mean 50, SD 10) for all SCI-QOL CATs and SFs. CATs are scored automatically by REDCap, the NIH PROMIS and Toolbox applications, and Assessment Center. SFs are also scored automatically by the NIH PROMIS and NIH Toolbox iPad applications. For SFs administered by paper-and-pencil or through Assessment Center, raw (sum) scores must be computed and then converted to T-scores using lookup tables available through SCI-QOL@udel.edu.
 
In all cases, higher scores indicate more of the trait being measured (as indicated by the name of the bank). For example, higher scores on SCI-QOL Basic Mobility and SCI-QOL Positive Affect and Well-Being indicate better outcomes whereas higher scores on SCI-QOL Depression and SCI-QOL Fatigue indicate worse outcomes.
References
Key References:
Tulsky DS, Kisala PA, Victorson D, Tate DG, Heinemann AW, Charlifue S, Kirshblum SC, Fyffe D, Gershon R, Spungen AM, Bombardier CH, Dyson-Hudson TA, Amtmann D, Kalpakjian CZ, Choi SW, Jette AM, Forchheimer M, Cella D. Overview of the Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system. J Spinal Cord Med. 2015;38(3):257-269.
 
Tulsky DS, Kisala PA, Victorson D, Choi SW, Gershon R, Heinemann AW, Cella D. Methodology for the development and calibration of the SCI-QOL item banks. J Spinal Cord Med. 2015;38(3):270-287.
 
Additional References:
Bertisch H, Kalpakjian CZ, Kisala PA, Tulsky DS. Measuring positive affect and well-being after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Positive Affect and Well-being bank and short form. J Spinal Cord Med. 2015;38(3):356-365.
 
Cohen ML, Kisala PA, Dyson-Hudson TA, Tulsky DS. Measuring pain phenomena after spinal cord injury: Development and psychometric properties of the SCI-QOL Pain Interference and Pain Behavior assessment tools. J Spinal Cord Med. 2018;41(3):267-280.
 
Heinemann AW, Kisala PA, Hahn EA, Tulsky DS. Development and psychometric characteristics of the SCI-QOL Ability to Participate and Satisfaction with Social Roles and Activities item banks and short forms. J Spinal Cord Med. 2015 May;38(3):397-408.
 
Kalpakjian CZ, Tate DG, Kisala PA, Tulsky DS. Measuring self-esteem after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Self-esteem item bank and short form. J Spinal Cord Med. 2015;38(3):377-385.
 
Kalpakjian CZ, Tulsky DS, Kisala PA, Bombardier CH. Measuring grief and loss after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Grief and Loss item bank and short form. J Spinal Cord Med. 2015;38(3):347-355.
 
Kisala PA, Tulsky DS, Choi SW, Kirshblum SC. Development and psychometric characteristics of the SCI-QOL Pressure Ulcers scale and short form. J Spinal Cord Med. 2015;38(3):303-314.
 
Kisala PA, Victorson D, Pace N, Heinemann AW, Choi SW, Tulsky DS. Measuring psychological trauma after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Psychological Trauma item bank and short form. J Spinal Cord Med. 2015;38(3):326-334.
 
Kisala PA, Tulsky DS, Kalpakjian CZ, Heinemann AW, Pohlig RT, Carle A, Choi SW. Measuring anxiety after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Anxiety item bank and linkage with GAD-7. J Spinal Cord Med. 2015;38(3):315-325.
 
Tulsky DS, Kisala PA. The Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system: Development, psychometrics, and item bank calibration. J Spinal Cord Med. 2015;38(3):251-256.
 
Tulsky DS, Kisala PA, Tate DG, Spungen AM, Kirshblum SC. Development and psychometric characteristics of the SCI-QOL Bladder Management Difficulties and Bowel Management Difficulties item banks and short forms and the SCI-QOL Bladder Complications scale. J Spinal Cord Med. 2015;38(3):288-302.
 
Tulsky DS, Kisala PA, Kalpakjian CZ, Bombardier CH, Pohlig RT, Heinemann AW, Carle A, Choi SW. Measuring depression after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Depression item bank and linkage with PHQ-9. J Spinal Cord Med. 2015;38(3):335-346.
 
Victorson D, Tulsky DS, Kisala PA, Kalpakjian CZ, Weiland B, Choi SW. Measuring resilience after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Resilience item bank and short form. J Spinal Cord Med. 2015;38(3):366-376.