1. TBI-QOL
- Author
-
Stephanie A. Kolakowsky-Hayner, Robin A. Hanks, Jeffrey Englander, Mitchell Rosenthal, Richard Gershon, Noelle E. Carlozzi, Pamela A. Kisala, Allen W. Heinemann, Elliot J. Roth, David S. Tulsky, David Cella, Nancy D. Chiaravalloti, Seung W. Choi, Angelle M. Sander, David Victorson, Mark Sherer, and Tamara Bushnik
- Subjects
Adult ,Male ,030506 rehabilitation ,medicine.medical_specialty ,Neurology ,Psychometrics ,Traumatic brain injury ,common data elements ,Poison control ,Physical Therapy, Sports Therapy and Rehabilitation ,03 medical and health sciences ,TBI-QOL Studies ,0302 clinical medicine ,Physical medicine and rehabilitation ,Quality of life ,Surveys and Questionnaires ,Item response theory ,Injury prevention ,medicine ,Humans ,Psychiatry ,business.industry ,traumatic brain injury ,Rehabilitation ,item response theory ,Human factors and ergonomics ,medicine.disease ,Patient Outcome Assessment ,health-related quality of life ,clinical research ,quality of life ,patient-reported outcomes ,Brain Injuries ,ComputingMethodologies_DOCUMENTANDTEXTPROCESSING ,Female ,Neurology (clinical) ,0305 other medical science ,business ,030217 neurology & neurosurgery - Abstract
Supplemental Digital Content is Available in the Text., Objective: To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL) measurement system expands the work of other large PRO measurement initiatives, that is, the Patient-Reported Outcomes Measurement Information System and the Neurology Quality-of-Life measurement initiative. Setting: Five TBI Model Systems centers across the United States. Participants: Adults with TBI. Design: Classical and modern test development methodologies were used. Qualitative input was obtained from individuals with TBI, TBI clinicians, and caregivers of individuals with TBI through multiple methods, including focus groups, individual interviews, patient consultation, and cognitive debriefing interviews. Item pools were field tested in a large multisite sample (n = 675) and calibrated using item response theory methods. Main Outcomes Measures: Twenty-two TBI-QOL item banks/scales. Results: The TBI-QOL consists of 20 independent calibrated item banks and 2 uncalibrated scales that measure physical, emotional, cognitive, and social aspects of health-related quality of life. Conclusions: The TBI-QOL measurement system has potential as a common data element in TBI research and to enhance collection of health-related quality-of-life and PRO data in rehabilitation research and clinical settings.
- Published
- 2016
- Full Text
- View/download PDF