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Arch Phys Med Rehabil. 2019 Apr;100(4S):S85-S93. doi: 10.1016/j.apmr.2018.05.034. Epub 2018 Jun 30.

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.

Author information

1
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
2
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; University of British Columbia, Vancouver, British Columbia, Canada.
3
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; Uniformed Services University of the Health Sciences, Bethesda, MD.
4
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.
5
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI.
6
Center for Assessment research and Translation, Department of Psychological and Brain Sciences, University of Delaware, Newark, DE.
7
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL.

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.

KEYWORDS:

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

PMID:
29966648
PMCID:
PMC6311445
[Available on 2020-04-01]
DOI:
10.1016/j.apmr.2018.05.034

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