Archives of Physical Medicine and Rehabilitation
Original researchUnderstanding 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
Section snippets
Participants
We recruited 560 participants who were caregivers of civilians and SMVs (sample details provided in Carlozzi et al, this issue48). Eligible caregivers needed to be ≥18 years old and able to read and understand English. Caregivers were required to be providing some form of care (emotional support, physical assistance, or financial assistance) to an individual with a medically documented TBI who was >1 year postinjury (ie, those caring for an individual still in the acute stage of recovery were
Participants
Detailed descriptive data for both the civilian and SMV samples are provided in Carlozzi et al.48 Briefly, caregivers of civilians were older (M=51.6y, SD=14.0) than caregivers of SMVs with TBI (M=37.2y, SD=8.6), t (555.94)=15.04, P<.01, and they were more likely to be caring for someone that was older (M=42.3y, SD=14.6), than the caregivers of the SMVs (M=37.1y, SD=7.5; t [535.41]=5.56, P<.01). Caregivers of SMVs had a higher proportion of women (98.1%) than those of civilians (78%), χ2
Discussion
For caregivers of people with TBI, well-validated patient-reported outcomes measures that assess self-reported sleep or fatigue have been sorely needed. This study provides support for the reliability and validity of the PROMIS measures of fatigue and sleep disturbance in caregivers of people with TBI.
Cronbach α for PROMIS sleep disturbance and fatigue were generally higher than or equivalent to other measures of physical function and HRQOL in caregivers of both civilians and SMVs with TBI.
Conclusions
PROMIS sleep disturbance and fatigue measures appear to provide brief, reliable, and valid assessments of physical health for caregivers of civilians and SMVs with TBI. Furthermore, these measures are able to differentiate between individuals who are caring for individuals with TBI who are low versus high functioning. Additional work is still needed to examine change over time and to determine the clinical utility of these measures. Ultimately, these measures fill a significant measurement gap
Acknowledgments
We thank the investigators, coordinators, and research associates/assistants who worked on this study and organizations who supported recruitment efforts. The University of Michigan Research Team would also like to thank the Hearts of Valor and the Brain Injury Association of Michigan for assistance with community outreach for recruitment efforts at this site.
TBI-CareQOL site investigators and coordinators: Noelle Carlozzi, Anna Kratz, Amy Austin, Mitchell Belanger, Micah Warschausky, Siera
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Supported by the National Institutes of Health—National Institute of Nursing Research (grant no. R01NR013658), the National Center for Advancing Translational Sciences (grant no. UL1TR000433), and the Defense and Veterans Brain Injury Center.
Disclosures: none.
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