Jason H Raad1, David S Tulsky2, Rael T Lange3, Tracey A Brickell4, Angelle M Sander5, Robin A Hanks6, Louis French7, Jennifer A Miner1, Pamela A Kisala2, Noelle E Carlozzi8. 1. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. 2. Center for Assessment Research and Translation, Department of Psychological and Brain Sciences, University of Delaware, Newark, DE. 3. Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD; National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD; Defense and Veterans Brain Injury Center, Silver Spring, MD; Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada. 4. Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD; National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD; Defense and Veterans Brain Injury Center, Silver Spring, MD; Edward Hebert School of Medicine, Uniformed Services University of the Health Sciences, Bethesda, MD. 5. H. Ben Taub Department of Physical Medicine and Rehabilitation, Baylor College of Medicine & Harris Health System, Houston, TX; Brain Injury Research Center, TIRR Memorial Hermann, Houston, TX. 6. Rehabilitation Institute of Michigan, Department of Psychology and Neuropsychology, Detroit, MI; Department of Physical Medicine and Rehabilitation, Wayne State University, Detroit, MI. 7. Defense and Veterans Brain Injury Center, Walter Reed National Military Medical Center, Bethesda, MD; National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, MD; Edward Hebert School of Medicine, Uniformed Services University of the Health Sciences, Bethesda, MD. 8. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI. Electronic address: carlozzi@med.umich.edu.
Abstract
OBJECTIVES: To understand the factor structure of health-related quality of life specific to caregivers of people living with traumatic brain injury (TBI). DESIGN: Prospective, cross-sectional data collection. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers (N=558) of people who have sustained a TBI (344 caregivers of civilians and 214 caregivers of service members or veterans; 85% women; 58% spouses; mean age, 46.12±14.07y) who have provided care for an average of 5.82±5.40 years. INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURES: The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system including 10 Patient-Reported Outcomes Measurement Information System item banks (anger, anxiety, depression, social isolation, sleep disturbance, fatigue, ability to participate in social roles and activities, satisfaction with social roles and activities, emotional support, informational support) and 5 TBI-CareQOL banks (feelings of loss-self, feelings of loss-person with TBI, feeling trapped, caregiver-specific anxiety, caregiver strain). RESULTS: Confirmatory factor analysis model fit indices were compared for 14 empirically derived and 5 theoretically derived models. Confirmatory factor analysis results indicated that the best model fit was for a 6-factor model with dimensions that included mental health, social support, social participation, social isolation, physical health, and caregiver emotion. CONCLUSIONS: Results indicated that a 6-factor model provided the best model fit for health-related quality of life in caregivers of individuals with TBI. These results have utility for both research and clinical applications. Establishing the TBI-CareQOL's factor structure provides preliminary evidence of the measurement system's construct validity, helps inform the selection of measures for specific research or clinical interventions, and informs the development of composite scores.
OBJECTIVES: To understand the factor structure of health-related quality of life specific to caregivers of people living with traumatic brain injury (TBI). DESIGN: Prospective, cross-sectional data collection. SETTING: Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. PARTICIPANTS: Caregivers (N=558) of people who have sustained a TBI (344 caregivers of civilians and 214 caregivers of service members or veterans; 85% women; 58% spouses; mean age, 46.12±14.07y) who have provided care for an average of 5.82±5.40 years. INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURES: The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system including 10 Patient-Reported Outcomes Measurement Information System item banks (anger, anxiety, depression, social isolation, sleep disturbance, fatigue, ability to participate in social roles and activities, satisfaction with social roles and activities, emotional support, informational support) and 5 TBI-CareQOL banks (feelings of loss-self, feelings of loss-person with TBI, feeling trapped, caregiver-specific anxiety, caregiver strain). RESULTS: Confirmatory factor analysis model fit indices were compared for 14 empirically derived and 5 theoretically derived models. Confirmatory factor analysis results indicated that the best model fit was for a 6-factor model with dimensions that included mental health, social support, social participation, social isolation, physical health, and caregiver emotion. CONCLUSIONS: Results indicated that a 6-factor model provided the best model fit for health-related quality of life in caregivers of individuals with TBI. These results have utility for both research and clinical applications. Establishing the TBI-CareQOL's factor structure provides preliminary evidence of the measurement system's construct validity, helps inform the selection of measures for specific research or clinical interventions, and informs the development of composite scores.
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