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

Abstract

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.

Understanding Health-Related Quality of Life of Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Social Health Measures

“…A detailed description of the sample (as well as sample size justification) is reported elsewhere. 50 Briefly, caregivers of SMVs were younger, more likely to be female, married, and caring for someone who was low functioning than caregivers of civilians; caregivers of civilians were more likely to be parents or other family members than caregivers of SMVs. There were no group differences in the number of years that caregivers provided care or for time since injury (for the person with the TBI).…”

The Development of a New Computer Adaptive Test to Evaluate Feelings of Being Trapped in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Feeling Trapped Item Bank

“…A description of this sample is detailed elsewhere. 30 Briefly, participants were recruited through existing TBI-specific caregiver databases, medical record data capture systems, 31 hospital-based recruitment and community outreach efforts at two TBI model system sites, an academic medical treatment center, and Walter Reed National Military Medical Center (WRNMMC). A caregiver was defined as an individual who provides physical assistance, financial assistance, or emotional support to an individual with a TBI.…”

“…A detailed summary of the origination of the Feeling Trapped Item Pool can be found in Carlozzi et al 30 Briefly, in accordance with established measurement development standards, 44 an initial item pool of 75 items was generated from focus group discussion among caregivers of individuals with TBI (nine groups with caregivers of civilian-related TBI and nine groups with caregivers of SVMs with TBI) 26,27 and systematic literature reviews. Items were refined via an iterative process that included expert review, evaluation of item literacy level, and caregiver cognitive debriefing to ensure adequate content coverage and appropriate reading and comprehension levels.…”

“…Sample size considerations are reported in Carlozzi et al, this issue. 30 Overview-In order to develop an item bank from the initial item pool, we followed established guidelines 44 incorporating classical test theory and item response theory (IRT) for measurement development. IRT is a mathematical modeling technique used to find a latent scale score from its component items, rather than using simple linear addition (as in classical test theory); it offers several advantages, including providing data about both the discriminability and difficulty of each item, and it can be used to program computer adaptive test (CAT) administration of a PRO measure.…”

“…Detailed descriptive data about the study sample can be found in Carlozzi et al 30 Briefly, on average caregivers were 46.1 years old (SD=14.1) and in the caregiver role for 5.8 years (SD=5.4). The majority of caregivers were female (85.5%), Caucasian (77.2%), married (74.2%), caring for a spouse (58.2%) or parent (22.9%), and well educated (81.5% have some college or a college degree).…”