Original research
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

https://doi.org/10.1016/j.apmr.2018.05.020Get rights and content

Highlights

  • The Patient-Reported Outcomes Measurement Information System (PROMIS) sleep and fatigue measures are both reliable and valid.

  • The PROMIS sleep and fatigue measures are clinically relevant for caregivers.

  • Caregivers of persons with brain injury have problems with sleep and fatigue.

Abstract

Objective

To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers.

Design

Cross-sectional survey data collected through an online data capture platform.

Setting

A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center.

Participants

Caregivers (N=560) of civilians (n=344) and service member/veterans (SMVs) (n=216) with TBI.

Intervention

Not applicable.

Main Outcome Measures

PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs).

Results

For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all α≥0.80), and test-retest reliability was acceptable (all r≥0.70 except for the fatigue CAT in the SMV sample r=0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment.

Conclusions

Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.

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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      The Patient-Reported Outcome Measurement Information System (PROMIS) computer-adaptive tests were used to measure self-reported physical and mental health. These tests have been validated in the TBI population (Carlozzi et al., 2019a; Carlozzi et al., 2019b; DeWalt et al., 2007). The following PROMIS measures were administered: sleep disturbance, sleep-related impairment, fatigue, pain interference, depression, anxiety, and anger.

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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.

    Disclaimer: The identification of specific products or scientific instrumentation does not constitute endorsement or implied endorsement on the part of the author, Department of Defense, or any component agency. While we generally exercise reference to products companies, manufacturers, organizations, etc in government produced works, the abstracts produced and other similarly situated research present a special circumstance when such a product inclusion becomes an integral part of the scientific endeavor.

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