Highlights
- •The TBI-CareQOL measurement system includes new and existing self-report measures.
- •Measures were developed specific to caring for someone with traumatic brain injury.
- •Generic measures also evaluate important quality of life constructs for caregivers.
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
List of abbreviations:
CAT (computer adaptive test), CFA (confirmatory factor analysis), DIF (differential item functioning), EFA (exploratory factor analysis), HRQOL (Health-Related Quality of Life), IRT (item response theory), MPAI-4 (Mayo-Portland Ability Inventory, Fourth Edition), PRO (patient-reported outcome), PROMIS (Patient-Reported Outcomes Measurement Information System), RMSEA (root mean squared error of approximation), SF (short form), SMV (service member/veteran), SRA (social roles and activities), TBI (traumatic brain injury), TBI-CareQOL (Traumatic Brain Injury Caregiver Quality of Life)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: September 06, 2018
Footnotes
Supported by the National Institutes of Health National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center.
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