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.
Noelle E Carlozzi, Michael A Kallen, Robin Hanks and 10 others
PMID 30195987WHAT IT FOUND
Caregivers of people with lower functioning after TBI reported poorer quality of life than caregivers of people with higher functioning.
New TBI-specific caregiver measures and existing quality-of-life scales both made this distinction in 560 caregivers.
Key findings
01The TBI-CareQOL item banks were field tested with 560 caregivers of people with TBI, including 344 caregivers of civilians and 216 caregivers of service members or veterans.
02Compared with 402 caregivers of high-functioning individuals, 144 caregivers of low-functioning individuals had significantly higher scores on all five new TBI-CareQOL measures, indicating poorer health-related quality of life.
03Caregivers of lower-functioning individuals also reported worse scores on standard PROMIS domains, including more anger, anxiety, depression, social isolation, fatigue and sleep disturbance, and less emotional and informational support and less participation in and satisfaction with social roles and activities.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Medical record documentation was insufficient for 26% of the overall sample to characterize TBI severity, and only 40% of service member/veteran caregivers had sufficient documentation, compared with 95% of civilian caregivers. The service member/veteran assistance eligibility question was not validated. Most surveys were completed at home, so answers could have been influenced or completed by someone other than the caregiver. Spanish translatability was reviewed by one expert rather than a consensus panel. The study provides preliminary validation only and did not test whether using the measures changes care.
Declared interests
The supplied text does not report author conflicts of interest. The publication types indicate research support from NIH extramural and U.S. government non-PHS sources.
The easy way to misread this
Do not conclude that the TBI-CareQOL measures improve caregiver or patient outcomes. This study developed and preliminarily validated the measures and showed that caregiver scores differed by care recipient functioning; it did not test an intervention.