Format

Send to

Choose Destination
Arch Phys Med Rehabil. 2019 Apr;100(4S):S1-S12. doi: 10.1016/j.apmr.2018.08.175. Epub 2018 Sep 7.

The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury.

Author information

1
Department of Physical Medicine and Rehabilitation, University of Michigan; Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
2
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL.
3
Rehabilitation Institute of Michigan, Department of Psychology and Neuropsychology, Detroit, MI; Department of Physical Medicine and Rehabilitation, Wayne State University, Detroit, MI.
4
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.
5
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.
6
Department of Physical Medicine and Rehabilitation, University of Michigan; Ann Arbor, MI.
7
Center for Assessment research and Translation, Department of Psychological and Brain Sciences, University of Delaware, Newark, DE.
8
H. Ben Taub Department of Physical Medicine and Rehabilitation, Baylor College of Medicine and Harris Health System, Houston, TX; Brain Injury Research Center, TIRR Memorial Hermann, Houston, TX.

Abstract

OBJECTIVE:

To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI).

DESIGN:

New item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing with caregivers of civilians and service members/veterans with TBI, as well as expert review, reading level assessment, and translatability review; existing item banks and new item pools were assessed using an online data capture system. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new caregiver-specific item banks. Known-groups validity was examined using a series of independent samples t tests comparing caregivers of low-functioning vs high-functioning persons with TBI for each of the new measures, as well as for 10 existing Patient-Reported Outcomes Measurement Information System (PROMIS) measures.

SETTING:

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

PARTICIPANTS:

Caregivers (N=560) of civilians (n=344) or service members/veterans with TBI (n=216).

INTERVENTIONS:

Not applicable.

MAIN OUTCOME MEASURES:

The TBI-CareQOL measurement system (including 5 new measures and 10 existing PROMIS measures).

RESULTS:

Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses supported the development of 5 new item banks for Feelings of Loss-Self, Feelings of Loss-Person with TBI, Caregiver-Specific Anxiety, Feeling Trapped, and Caregiver Strain. In support of validity, individuals who were caring for low-functioning persons with TBI had significantly worse HRQOL than caregivers that were caring for high-functioning persons with TBI for both the new caregiver-specific HRQOL measures, and for the 10 existing PROMIS measures.

CONCLUSIONS:

The TBI-CareQOL includes both validated PROMIS measures and newly developed caregiver-specific measures. Together, these generic and specific measures provide a comprehensive assessment of HRQOL for caregivers of civilians and service members/veterans with TBI.

KEYWORDS:

Caregivers; Health care; Military personnel; Quality of life; Rehabilitation; Traumatic brain injuries; Veterans

PMID:
30195987
PMCID:
PMC6456033
[Available on 2020-04-01]
DOI:
10.1016/j.apmr.2018.08.175

Supplemental Content

Full text links

Icon for Elsevier Science
Loading ...
Support Center