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Establishing the Factor Structure of a Health-Related Quality of Life Measurement System for Caregivers of Persons Living With Traumatic Brain Injury

  • Jason H. Raad
    Affiliations
    Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
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  • David S. Tulsky
    Affiliations
    Center for Assessment Research and Translation, Department of Psychological and Brain Sciences, University of Delaware, Newark, DE
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  • Rael T. Lange
    Affiliations
    Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD

    National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD

    Defense and Veterans Brain Injury Center, Silver Spring, MD

    Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
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  • Tracey A. Brickell
    Affiliations
    Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD

    National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD

    Defense and Veterans Brain Injury Center, Silver Spring, MD

    Edward Hebert School of Medicine, Uniformed Services University of the Health Sciences, Bethesda, MD
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  • Angelle M. Sander
    Affiliations
    H. Ben Taub Department of Physical Medicine and Rehabilitation, Baylor College of Medicine & Harris Health System, Houston, TX

    Brain Injury Research Center, TIRR Memorial Hermann, Houston, TX
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  • Robin A. Hanks
    Affiliations
    Rehabilitation Institute of Michigan, Department of Psychology and Neuropsychology, Detroit, MI

    Department of Physical Medicine and Rehabilitation, Wayne State University, Detroit, MI
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  • Louis French
    Affiliations
    Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD

    National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD

    Edward Hebert School of Medicine, Uniformed Services University of the Health Sciences, Bethesda, MD
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  • Jennifer A. Miner
    Affiliations
    Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
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  • Pamela A. Kisala
    Affiliations
    Center for Assessment Research and Translation, Department of Psychological and Brain Sciences, University of Delaware, Newark, DE
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  • Noelle E. Carlozzi
    Correspondence
    Corresponding author Noelle E. Carlozzi, PhD, Department of Physical Medicine & Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Ann Arbor, MI 48109-2800.
    Affiliations
    Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI
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Published:April 18, 2020DOI:https://doi.org/10.1016/j.apmr.2020.03.014

      Abstract

      Objectives

      To understand the factor structure of health-related quality of life specific to caregivers of people living with traumatic brain injury (TBI).

      Design

      Prospective, cross-sectional data collection.

      Setting

      Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility.

      Participants

      Caregivers (N=558) of people who have sustained a TBI (344 caregivers of civilians and 214 caregivers of service members or veterans; 85% women; 58% spouses; mean age, 46.12±14.07y) who have provided care for an average of 5.82±5.40 years.

      Interventions

      Not applicable.

      Main Outcomes Measures

      The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system including 10 Patient-Reported Outcomes Measurement Information System item banks (anger, anxiety, depression, social isolation, sleep disturbance, fatigue, ability to participate in social roles and activities, satisfaction with social roles and activities, emotional support, informational support) and 5 TBI-CareQOL banks (feelings of loss–self, feelings of loss–person with TBI, feeling trapped, caregiver-specific anxiety, caregiver strain).

      Results

      Confirmatory factor analysis model fit indices were compared for 14 empirically derived and 5 theoretically derived models. Confirmatory factor analysis results indicated that the best model fit was for a 6-factor model with dimensions that included mental health, social support, social participation, social isolation, physical health, and caregiver emotion.

      Conclusions

      Results indicated that a 6-factor model provided the best model fit for health-related quality of life in caregivers of individuals with TBI. These results have utility for both research and clinical applications. Establishing the TBI-CareQOL’s factor structure provides preliminary evidence of the measurement system’s construct validity, helps inform the selection of measures for specific research or clinical interventions, and informs the development of composite scores.

      Keywords

      List of abbreviations:

      AIC (Akaike information criterion), CMIN/DF (χ2 divided by degrees of freedom), CFI (comparative fit index), HRQOL (health-related quality of life), PRO (patient-reported outcome), PROMIS (Patient Reported Outcomes Measurement Information System), RMSEA (root mean square error of approximation), SMV (service member and veteran), TBI (traumatic brain injury), TBI-CareQOL (Traumatic Brain Injury Caregiver Quality of Life), TBI-QOL (Traumatic Brain Injury–Quality of Life), TLI (Tucker-Lewis Index)
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