Understanding and Assessing Health-Related Quality of Life in Caregivers of Individuals with Traumatic Brain Injury and Comorbid Posttraumatic Stress Disorder.

Abstract

To establish the reliability and validity of measures from the TBI-CareQOL measurement system in care partners of individuals with comorbid TBI and PTSD and to compare HRQOL between care partners of individuals with TBI with and without PTSD. Survey study. Two academic medical centers PARTICIPANTS: 246 care partners of individuals with TBI INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: Psychometric qualities of Neuro-Qol TBI-CareQOL Caregiver Strain and Caregiver-Specific Anxiety, PROMIS short form assessments of Anger, Anxiety, Depression, Fatigue, Ability to Participate in Social Roles and Activities, and Sleep-Related Impairment, NIH Toolbox assessments of Perceived Stress and Self-Efficacy, Neuro-QoL Positive Affect and Well-Being. Our results provide evidence for the internal consistency reliability for all TBI-CareQOL measures (α ≥ .70), which were also devoid of ceiling and floor effects, excluding a slightly elevated floor effect (23%) for PROMIS Depression. Convergent and discriminant validity were established by demonstrating moderate-high correlations between similar constructs, and minimal-low correlations between dissimilar constructs. Known groups validity was established by demonstrating significantly worse HRQOL for care partners of individuals with both TBI and PTSD compared to care partners for individuals with TBI alone. Caring for an individual with PTSD was associated with elevated impairment rates in comparison to the general population and care partners of individuals without PTSD. We also demonstrate significant negative correlations between measures of care partner HRQOL and PCL-5 score, and provide evidence that PTSD significantly predicts Caregiver Strain above and beyond functional impairment in the care recipient and time spent caregiving. We provide evidence for the clinical utility of TBI-CareQOL measures in care partners of individuals with both TBI and PTSD. Our data also suggests that caring for individuals with both PTSD and TBI is associated with lower HRQOL and higher impairment.