Development of Item Pools
The TBI-CareQOL team utilized a rigorous, multi-phase process to develop the TBI-CareQOL item pools. First, to characterize caregivers of people with TBI-relevant health-related quality of life (HRQOL) domains (including the identification of relevant Neuro-QoL/PROMIS measures) and to develop items for domains that were not captured within these existing systems, literature reviews and focus group studies were conducted. Focus groups were conducted with different groups, including caregivers of service members/veterans with TBI and caregivers of civilians with TBI. Focus group discussions were analyzed to identify the most important issues affecting quality of life.
The next step of the development of the TBI-CareQOL measurement system was to create preliminary item pools examining feelings of loss, feeling trapped, caregiver-specific anxiety, caregiver strain, emotional suppression, caregiver vigilance, family disruption and military health care frustration. Each item pool went through several different iterations based on expert review, translatability review, literacy review, and cognitive debriefing interviews with caregivers individuals with TBI.
Once the item pools were developed, all items were field tested in more than 500 caregivers of individuals with TBI from across the United States. The best items were included in the final TBI-CareQOL item banks (measures). A detailed explanation of this process can be found in the TBI-CareQOL overview papers.