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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

Published:September 06, 2018DOI:https://doi.org/10.1016/j.apmr.2018.08.175

      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)
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