TBI-QOL: Development and calibration of item banks to measure patient reported outcomes following traumatic brain injury

David S. Tulsky*, Pamela A. Kisala, David Victorson, Noelle Carlozzi, Tamara Bushnik, Mark Sherer, Seung W. Choi, Allen W. Heinemann, Nancy Chiaravalloti, Angelle M. Sander, Jeffrey Englander, Robin Hanks, Stephanie Kolakowsky-Hayner, Elliot Roth, Richard Gershon, Mitchell Rosenthal, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

63 Scopus citations

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 languageEnglish (US)
Pages (from-to)40-51
Number of pages12
JournalJournal of Head Trauma Rehabilitation
Volume31
Issue number1
DOIs
StatePublished - 2016

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

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation
  • Clinical Neurology

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