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). 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. Three TBI Model Systems rehabilitation hospitals, an academic medical center,
and a military medical treatment
facility. Caregivers (N=560) of civilians (n=344) or service members/veterans with
TBI (n=216). Not applicable. The TBI-CareQOL measurement system (including 5 new measures
and 10 existing PROMIS measures). 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.
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.