Abstract
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 OutcomesMeasurement 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 qualityof-life and PRO data in rehabilitation research and clinical settings.
Original language | English (US) |
---|---|
Pages (from-to) | 40-51 |
Number of pages | 12 |
Journal | Journal of Head Trauma Rehabilitation |
Volume | 31 |
Issue number | 1 |
DOIs | |
State | Published - 2016 |
Funding
This study was supported by grant nos. H133G070138, H133A070037, H133A070043, H133A080045, H133A080044, andH133A70038 from the National Institute on Disability and Rehabilitation Research.
Keywords
- Clinical research
- Common data elements
- Health-related quality of life
- Item response theory
- Patient-reported outcomes
- Quality of life
- Traumatic brain injury
ASJC Scopus subject areas
- Clinical Neurology
- Rehabilitation
- Physical Therapy, Sports Therapy and Rehabilitation