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

Publication date: Available online 7 September 2018

Source: Archives of Physical Medicine and Rehabilitation

Author(s): Noelle E. Carlozzi, Michael A. Kallen, Robin Hanks, Elizabeth A. Hahn, Tracey A. Brickell, Rael T. Lange, Louis M. French, Anna L. Kratz, David S. Tulsky, David Cella, Jennifer A. Miner, Phillip A. Ianni, Angelle M. Sander

Abstract

Objective

To develop a new measurement system, the 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. caregivers of high-functioning persons with TBI for each of the new measures, as well as for 10 existing PROMIS measures.

Setting

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

Participants

560 caregivers 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 five 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.

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