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Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Reliability and Validity Data for the TBI-CareQOL Measurement System

      Abstract

      Objectives

      To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs) with traumatic brain injury (TBI) so that they can be used with confidence in clinical research and practice.

      Design

      Computer-based surveys delivered through an on-line data capture platform.

      Setting

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

      Participants

      Caregivers (N=560) of individuals with TBI; this included 2 different study samples: 344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI.

      Intervention

      Not Applicable.

      Main Outcome Measures

      Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks.

      Results

      Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach’s α >.88); 3-week test-retest reliability ranged from .75 to .90 across the 2 samples. Convergent validity was supported by moderate to high associations among the TBI-CareQOL measures and moderate correlations between the TBI-CareQOL measures and other measures of health-related quality of life (HRQOL) and caregiver burden. Discriminant validity was supported by low correlations between the TBI-CareQOL measures and less-related constructs (eg, caregiver satisfaction). Known-groups validity was supported: caregivers of individuals that were low functioning had worse HRQOL than caregivers of high-functioning individuals.

      Conclusions

      Results provide psychometric support for the new TBI-CareQOL item banks. As such, these measures fill a significant gap in the caregiver literature where sensitive PRO measures that capture changes in HRQOL are needed to detect improvements for interventions designed to assist family caregivers.

      Keywords

      List of abbreviations:

      CAS (caregiver appraisal scale), CAT (computer adaptive test), HRQOL (health-related quality of life), MHC (Mental Health Composite), MPAI-4 (Mayo-Portland Adaptability Inventory, Fourth Edition), PHC (Physical Health Composite), PRO (patient-reported outcome), PROMIS (Patient-Reported Outcomes Measurement Information System), SF (short form), SMV (service member/veteran), TBI (traumatic brain injury), TBI-CareQOL (Traumatic Brain Injury Caregiver Quality of Life)
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