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Traumatic Brain Injury - Quality of Life (TBI-QOL)
Availability
TBI-QOL is copyright © 2009; 2016. David Tulsky and Kessler Foundation. All rights reserved. PDF copies of all TBI-QOL item banks and short forms are freely available to the public by contacting TBI-QOL@udel.edu. All TBI-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. TBI-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
NeuroRehab Supplemental - Highly Recommended
Recommendations for Use: Indicated for studies requiring a Traumatic Brain Injury-Specific Health-Related Quality of Life measure.
 
Exploratory: Sport-Related Concussion (SRC) and Traumatic Brain Injury (TBI)
Short Description of Instrument
The TBI-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 and Rehabilitation Research to develop and validated a multifaceted system of measuring patient reported outcomes across a wide variety of functioning specifically targeted for individuals with TBI. Evaluation of the sensitivity and responsiveness is currently being studied.
 
The measures were developed following all standards of development advanced by the PROMIS measurement scales. Twenty-three areas of functioning are measured through Computer Adaptive Tests and/or short forms. Some scales are unique to the needs of individuals with TBI (e.g., resilience, grief and loss, mobility, independence) while other scales used PROMIS and Neuro-QOL items but recalibrated scores to optimize assessment within an TBI 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 TBI.
 
For more information on linkages between the TBI-QOL, PROMIS, and Neuro- QOL, please see the Guidelines for Use of NIH Resources for Clinical Studies document.
 
Administration: Computer adaptive test (CAT) or short forms (SF). Contact TBI-QOL@udel.edu for access. Currently, CATs are available through the public REDCap instrument library and the NIH PROMIS and NIH Toolbox iPad applications. SFs may be administered by paper and pencil, through REDCap, through the NIH PROMIS and NIH Toolbox iPad apps, 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: TBI-QOL measures were calibrated with adults only (ages 18 and older)
 
Cost: Free to investigators/clinicians who sign a use agreement (available from TBI-QOL@udel.edu). REDCap is freely available to individuals affiliated with subscribing institutions. The NIH PROMIS and NIH Toolbox iPad applications require an annual license fee.
 
Languages: TBI-QOL measures are currently available in English only.
 
Scoring
Standard scores are provided on a T metric (mean 50, SD 10) for all TBI-QOL CATs and SFs. CATs are scored automatically by Assessment Center. For SFs, raw (sum) scores must be computed and then converted to T-scores using lookup tables available through TBI-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 TBI-QOL Basic Mobility and TBI-QOL Positive Affect and Well-Being indicate better outcomes whereas higher scores on TBI-QOL Depression and TBI-QOL Fatigue indicate worse outcomes.
Scoring and Psychometric Properties
Standard scores are provided on a T metric (mean 50, SD 10) for all TBI-QOL CATs and SFs. CATs are scored automatically, by REDCap and the NIH PROMIS and Toolbox applications. SFs are also scored automatically by the NIH PROMIS and NIH Toolbox iPad applications. For SFs administered by paper-and-pencil, raw (sum) scores must be computed and then converted to T-scores using lookup tables available through TBI-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 TBI-QOL Basic Mobility and TBI-QOL Positive Affect and Well-Being indicate better outcomes whereas higher scores on TBI-QOL Depression and TBI-QOL Fatigue indicate worse outcomes.
Rationale/Justification
Sport-Related Concussion Specific:
 
Advantages: the domains are appropriate for adults and concern specifically patients suffering from TBI.
 
Limitations: 1) does not consider not- complicated mTBI with negative neuroimaging (the majority of concussions). 2) consider only two groups: those who had been injured in the past 6 to 18 months and in the past 18 months to 3 years. Not tested for the acute phase and therefore has limited validation in the target.
Age Range: older children
References
Carlozzi NE, Tulsky DS, Kisala PA. Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury. Arch Phys Med Rehabil. 2011;92(10Suppl):S52-S60.
 
TBI-QOL:
 
Tulsky DS, Kisala PA, Victorson D, Carlozzi N, Bushnik T, Sherer M, Choi SW, Heinemann AW, Chiaravalloti N, Sander AM, Englander J, Hanks R, Kolakowsky-Hayner S, Roth E, Gershon R, Rosenthal M, Cella D. TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury. J Head Trauma Rehabil. 2016;31(1):40-51.
 
NeuroRehab Specific References:
 
Tulsky DS, Kisala PA. An Overview of the Traumatic Brain Injury - Quality of Life (TBI-QOL) Measurement System. Journal of Head Trauma Rehabilitation. 2019;34(5):281-288.
 
Boulton AJ, Tyner CE, Choi SW, Sander AM, Bushnik T, Chiaravalloti N, Sherer M, Kisala PA, Tulsky DS. Linking the GAD-7 and PHQ-9 to the TBI-QOL Anxiety and Depression Item Banks. Journal of Head Trauma Rehabilitation. 2019;34(5):353-363.
 
Capo-Lugo CE, Kisala PA, Boulton A, Choi SW, Heinemann AW, Tulsky DS. Measuring Self-Reported Physical Function in Individuals with TBI: Development of the TBI-QOL Mobility & Upper Extremity Item Banks and Short Forms. Journal of Head Trauma Rehabilitation. 2019;34(5):340-352.
 
Carlozzi NE, Kisala PA, Boulton AJ, Roth E, Kratz AL, Sherer M, Sander AM, Heinemann AW, Chiaravalloti ND, Bushnik T, Tulsky DS. Measuring Pain in TBI: Development of the TBI-QOL Pain Interference Item Bank and Short Form. Archives of Physical Medicine and Rehabilitation. 2020;101(1):11-19.
 
Carlozzi NE, Tyner CE, Kisala PA, Sherer M, Chiaravalloti N, Tulsky DS. Measuring Self-Reported Cognitive Function Following TBI: Development of the TBI-QOL Executive Function and Cognition-General Concerns Item Banks. Journal of Head Trauma Rehabilitation. 2019;34(5):308-325.
 
Cohen ML, Kisala PA, Boulton AJ, Carlozzi NE, Cook CV, Tulsky DS. Development and Psychometric Characteristics of the TBI-QOL Communication Item Bank. Journal of Head Trauma Rehabilitation. 2019;34(5):326-339.
 
Heinemann AW, Kisala PA, Boulton AJ, Sherer M, Sander AM, Chiaravalloti N, Bushnik T, Hanks R, Roth E, Tulsky DS. Development and Calibration of the TBI-QOL Ability to Participate in Social Roles and Activities and TBI-QOL Satisfaction with Social Roles and Activities Item Banks and Short Forms. Archives of Physical Medicine and Rehabilitation. 2020;1010(1):20-32.
 
Kisala PA, Bushnik T, Boulton A, Hanks R, Kolakowski-Hayner S, Tulsky D.S. Measuring Fatigue in TBI: Development of the TBI-QOL Fatigue Item Bank and Short Form. Journal of Head Trauma Rehabilitation. 2019;34(5):289-297.
 
Kisala PA, Tulsky DS, Boulton AJ, Heinemann AH, Victorson D, Sherer M, Sander AM, Chiaravalloti N, Carlozzi NE, Hanks R. Development and Psychometric Characteristics of the TBI-QOL Independence Item Bank and Short Form and the TBI-QOL Asking for Help Scale. Archives of Physical Medicine. 2020;101(1):33-42.
 
Poritz JMP, Sherer M, Kisala PA, Tulsky DS, Leon-Novelo L, Ngan E. Responsiveness of the Traumatic Brain Injury - Quality of Life (TBI-QOL) Measurement System. Arch Phys Med Rehabil. 2020;101(1):54-61.
 
Sherer M, Poritz JMP, Tulsky DS, Kisala PA, Leon-Novelo L, Ngan E. Conceptual Structure of Health Related Quality of Life for Persons with Traumatic Brain Injury: Confirmatory Factor Analysis of the TBI-QOL. Arch Phys Med Rehabil. 2020;101(1):62-71.
 
Tulsky DS, Tyner CE, Boulton AJ, Kisala PA, Heinemann AW, Roth EJ, Carlozzi NE. Development of the TBI-QOL Headache Pain Item Bank and Short Form. Journal of Head Trauma Rehabilitation. 2019;34(5):298-307.
 
Tyner CE, Boulton AJ, Sherer M, Kisala PA, Glutting JJ, Tulsky DS. Development of Composite Scores for the Traumatic Brain Injury Quality of Life Measurement System (TBI-QOL). Arch Phys Med Rehab. 2020;101(1):43-53.
 
Document last updated January 2022