Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks.
Noelle E Carlozzi, Phillip A Ianni, David S Tulsky and 7 others
PMID 29932884WHAT IT FOUND
The PROMIS Fatigue and Sleep Disturbance tests are reliable and valid for caregivers of people with traumatic brain injury.
They take under a minute to complete and accurately distinguish caregivers of high-functioning patients from those of low-functioning patients.
Key findings
01The PROMIS Fatigue and Sleep Disturbance measures demonstrated good internal consistency and test-retest reliability in caregivers of civilians and service members/veterans with TBI.
02Caregivers of individuals rated as low functioning had significantly worse sleep and fatigue scores, generally about half a standard deviation lower, compared to caregivers of high-functioning individuals.
03Computer adaptive tests showed fewer floor and ceiling effects than short forms, and administration times were brief, ranging from 16 to 39 seconds.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The study relied solely on self-report data and did not include objective assessments of sleep. The sample was primarily Caucasian, female, and spouses of the person with TBI, which limits generalizability to male caregivers, parents, or racial/ethnic minorities. Medical records for injury severity were only available for 40% of the service member/veteran sample, preventing analysis of how TBI severity specifically impacts caregiver outcomes. The three-week interval for test-retest reliability is longer than typical, and because sleep and fatigue fluctuate naturally, the stability of scores over this period may be lower than expected. Responsiveness to change and minimal important differences for these measures in caregivers have not yet been established.
Declared interests
The study was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the Department of Defense.
The easy way to misread this
Do not assume these measures are proven to track improvement over time or detect small changes in caregiver health. The study established that the tests are reliable and valid for describing current status, but it did not evaluate responsiveness to change, meaning clinicians cannot yet use them to measure the effectiveness of an intervention on caregiver fatigue.