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)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: April 18, 2020
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.
Disclosures: none.
TBI-CareQOL Site Investigators and Coordinators: Noelle Carlozzi, Anna Kratz, Amy Austin, Mitchell Belanger, Micah Warschausky, Siera Goodnight, Jennifer A. Miner (University of Michigan, Ann, Arbor, MI); Angelle Sander (Baylor College of Medicine and TIRR Memorial Hermann, Houston, TX), Curtisa Light (TIRR Memorial Hermann, Houston, TX); Robin Hanks, Daniela Ristova-Trendov (Wayne State University/Rehabilitation Institute of Michigan, Detroit, MI); Nancy Chiaravalloti, Dennis Tirri, Belinda Washington (Kessler Foundation, West Orange, NJ); Tracey Brickell, Rael Lange, Louis M. French, Rachel Gartner, Megan Wright, Angela Driscoll, Diana Nora, Jamie Sullivan, Nicole Varbedian, Johanna Smith, Lauren Johnson, Heidi Mahatan, Mikelle Mooney, Mallory Frazier, Zoe Li, and Deanna Pruitt (Walter Reed National Military Medical Center/Defense and Veterans Brain Injury Center, Bethesda, MD).
The identification of specific products or scientific instrumentation does not constitute endorsement or implied endorsement on the part of the author, Department of Defense, or any component agency. While we generally exercise reference to products companies, manufacturers, organizations, etc. in government produced works, the abstracts produced and other similarly situated research presents a special circumstance when such product inclusions become an integral part of the scientific endeavor.
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© 2020 by the American Congress of Rehabilitation Medicine
