Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System

Noelle E. Carlozzi*, Rael T. Lange, Louis M. French, Angelle M. Sander, Phillip A. Ianni, David S. Tulsky, Jennifer A. Miner, Michael A. Kallen, Tracey A. Brickell

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

Objectives: To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice. Design: Computer-based surveys delivered through an on-line data capture platform. Setting: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants: Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI. Intervention: Not Applicable. Main Outcome Measures: Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks. Results: Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach's α >.88); 3-week test-retest reliability ranged from.75 to.90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals. Conclusions: Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

Original languageEnglish (US)
Pages (from-to)S85-S93
JournalArchives of physical medicine and rehabilitation
Volume100
Issue number4
DOIs
StatePublished - Apr 2019

Keywords

  • Brain injury
  • Health-related quality of life
  • Military family
  • Patient reported outcome
  • Rehabilitation
  • Traumatic brain injury
  • Veterans

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

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