Abstract
Objectives
To establish the reliability and validity of the newly developed TBI-CareQOL patient-reported
outcome (PRO) measures in caregivers of civilians and service members/veterans (SMVs)
with traumatic brain injury (TBI) so that they can be used with confidence in clinical
research and practice.
Design
Computer-based surveys delivered through an on-line data capture platform.
Setting
Three TBI Model Systems rehabilitation hospitals, an academic medical center, and
a military medical treatment facility.
Participants
Caregivers (N=560) of individuals with TBI; this included 2 different study samples:
344 caregivers of civilians with TBI and 216 caregivers of SMVs with TBI.
Intervention
Not Applicable.
Main Outcome Measures
Five Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) item banks.
Results
Reliabilities for the TBI-CareQOL measures were excellent (all Cronbach’s α >.88);
3-week test-retest reliability ranged from .75 to .90 across the 2 samples. Convergent
validity was supported by moderate to high associations among the TBI-CareQOL measures
and moderate correlations between the TBI-CareQOL measures and other measures of health-related
quality of life (HRQOL) and caregiver burden. Discriminant validity was supported
by low correlations between the TBI-CareQOL measures and less-related constructs (eg,
caregiver satisfaction). Known-groups validity was supported: caregivers of individuals
that were low functioning had worse HRQOL than caregivers of high-functioning individuals.
Conclusions
Results provide psychometric support for the new TBI-CareQOL item banks. As such,
these measures fill a significant gap in the caregiver literature where sensitive
PRO measures that capture changes in HRQOL are needed to detect improvements for interventions
designed to assist family caregivers.
Keywords
List of abbreviations:
CAS (caregiver appraisal scale), CAT (computer adaptive test), HRQOL (health-related quality of life), MHC (Mental Health Composite), MPAI-4 (Mayo-Portland Adaptability Inventory, Fourth Edition), PHC (Physical Health Composite), PRO (patient-reported outcome), PROMIS (Patient-Reported Outcomes Measurement Information System), SF (short form), SMV (service member/veteran), TBI (traumatic brain injury), TBI-CareQOL (Traumatic Brain Injury Caregiver Quality of Life)To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Archives of Physical Medicine and RehabilitationAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Cognitive sequelae of traumatic brain injury.Psychiatric Clin North Am. 2014; 37: 1-11
- Depression following adult, non-penetrating traumatic brain injury: a meta-analysis examining methodological variables and sample characteristics.Neurosci Biobehav Rev. 2014; 47: 1-15
- Prevalence of anxiety following adult traumatic brain injury: a meta-analysis comparing measures, samples and postinjury intervals.Neuropsychology. 2016; 30: 247-261
- Prevalence, clinical features, and correlates of inappropriate sexual behavior after traumatic brain injury: a multicenter study.J Head Trauma Rehabil. 2013; 28: 202-210
- Prevalence, comorbidities, and correlates of challenging behavior among community-dwelling adults with severe traumatic brain injury: a multicenter study.J Head Trauma Rehabil. 2014; 29: E19-E30
- Vision disturbances following traumatic brain injury.Curr Treat Options Neurol. 2002; 4: 271-280
- Movement disorders secondary to craniocerebral trauma.Handb Clin Neurol. 2015; 128: 475-496
- US population estimates of health and social outcomes 5 years after rehabilitation for traumatic brain injury.J Head Trauma Rehabil. 2014; 29: E1-E9
- Ten-year employment patterns of working age individuals after moderate to severe traumatic brain injury: a National Institute on Disability and Rehabilitation Research Traumatic Brain Injury Model Systems study.Arch Phys Med Rehabil. 2015; 96: 2128-2136
- Long-term employment outcomes following traumatic brain injury and orthopaedic trauma: a ten-year prospective study.J Rehabil Med. 2015; 47: 932-940
- A comprehensive picture of 4-year outcome of severe brain injuries. Results from the PariS-TBI study.Ann Phys Rehabil Med. 2016; 59: 100-106
- Interventions for caregivers.in: High M. Sander A.M. Struchen M.A. Hart K.A. Rehabilitation for traumatic brain injury. Oxford University Press, New York2005: 156-175
- Measuring quality of life in palliative care.Semin Oncol. 1995; 22: 73-81
- Primary caregivers' psychological status and family functioning after traumatic brain injury.Brain Inj. 1994; 8: 197-210
- Patient outcome in the year following severe head injury and relatives' psychiatric and social functioning.J Neurol Neurosurg Psychiatry. 1985; 48: 876-881
- Caregiver burden at 6 months following severe traumatic brain injury.Brain Inj. 1998; 12: 225-238
- Psychosocial sequelae of closed head injury: effects on the marital relationship.Brain Inj. 1990; 4: 39-47
- Change in relationship status following traumatic brain injury.Brain Inj. 1997; 11: 491-501
- The Los-Angeles Head-Injury Survey: procedures and initial findings.Arch Phys Med Rehabil. 1988; 69: 425-431
- Networks of social support and the outcome from severe head injury.J Head Trauma Rehabil. 1987; 2: 14-23
- Family stressors in traumatic brain injury: a two-year follow-up.Arch Phys Med Rehabil. 1994; 75: 876-884
- The long term rehabilitation of severe head injuries with particular reference to the need for social and medical support for the patient’s family.Rehabilitation. 1972; 38: 33-37
- The relationship between caregiver burden and TBI survivors' cognition and functional ability after discharge.Rehabil Nurs. 1998; 23: 252-257
- Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury.J Head Trauma Rehabil. 2011; 26: 20-29
- Impact of traumatic brain damage on family dynamics and functioning: a review.Brain Inj. 1989; 3: 219-233
- The adversarial alliance: developing therapeutic relationships between families and the team in brain injury rehabilitation.Brain Inj. 1993; 7: 45-51
- Depression, social support, and family coping following traumatic brain injury.Brain Cognition. 2000; 44: 45-49
- Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury.Brain Inj. 2002; 16: 649-657
- Relationship of caregiver and family functioning to participation outcomes after postacute rehabilitation for traumatic brain injury: a multicenter investigation.Arch Phys Med Rehabil. 2012; 93: 842-848
- Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury.Arch Phys Med Rehabil. 2010; 91: 1542-1550
- Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model.Arch Phys Med Rehabil. 2015; 96: 105-113
- Caring for our wounded warriors: a qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury.J Rehabil Res Dev. 2016; 53: 669-680
- Strain among caregivers: a study of experience in the United States.Gerontologist. 1983; 23: 597-604
- Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study.Am J Geriatr Psychiatry. 2005; 13: 795-801
- Caregiving and the stress process: an overview of concepts and their measures.Gerontologist. 1990; 30: 583-594
- Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer's disease.Gerontologist. 2002; 42: 751-765
- The TBI-CareQOL measurement system: development and preliminary validation of health-related quality of life measures for caregivers of civilians and service members/veterans with traumatic brain injury.Arch Phys Med Rehabil. 2019; 100: S1-S12
- The development of a new computer adaptive test to evaluate feelings of being trapped in caregivers of individuals with traumatic brain injury: TBI-CareQOL feeling trapped item bank..Arch Phys Med Rehabil. 2019; 100: S43-S51
- The development of a new computer-adaptive test to evaluate strain in caregivers of individuals with TBI: TBI-CareQOL caregiver strain.Arch Phys Med Rehabil. 2019; 100: S13-S21
- The development of two new computer adaptive tests to evaluate feelings of loss in caregivers of individuals with traumatic brain injury: TBI-CareQOL feelings of loss-self and feelings of loss-person with traumatic brain injury.Arch Phys Med Rehabil. 2019; 100: S31-S42
- The development of a new computer adaptive test to evaluate anxiety in caregivers of individuals with traumatic brain injury: TBI-CareQOL Caregiver-specific anxiety.Arch Phys Med Rehabil. 2019; 100: S22-S30
- The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested in its first wave of adult self-reported health outcome item banks: 2005-2008.J Clin Epidemiol. 2010; 63: 1179-1194
PROMIS Instrument Development and Psychometric Evaluation Scientific Standards. http://www.healthmeasures.net/images/PROMIS/PROMISStandards_Vers2.0_Final.pdf.
- Understanding health-related quality of life of caregivers of civilians and service members/veterans with traumatic brain injury: establishing the reliability and validity of PROMIS social health measures.Arch Phys Med Rehabil. 2019; 100: S110-S118
- 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.Arch Phys Med Rehabil. 2019; 100: S102-S109
- Understanding health-related quality of life in caregivers of civilians and service member/veterans with traumatic brain injury: establishing the reliability and validity of PROMIS mental health measures.Arch Phys Med Rehabil. 2019; 100: S94-S101
- Representativeness of the Traumatic Brain Injury Model Systems National Database.J Head Trauma Rehabil. 2012; 27: 391-403
- User's manual for the Medical Outcomes Study (MOS) core measures of health-related quality of life.RAND Corporation, Santa Monica1995
- Relatives of the impaired elderly: correlates of feelings of burden.Gerontologist. 1980; 20: 649-655
- Measuring caregiving appraisal.J Gerontology. 1989; 44: P61-P71
- A multidimensional measure of caregiving appraisal: validation of the Caregiver Appraisal Scale in traumatic brain injury.J Head Trauma Rehabil. 2002; 17: 132-154
- Further psychometric evaluation and revision of the Mayo-Portland Adaptability Inventory in a national sample.J Head Trauma Rehabil. 2003; 18: 479-492
- Principles of statistics.Dover Publications, New York1979
- Psychometric theory.McGraw-Hill, New York1994
- Statistical power analysis for the behavioral sciences.2nd ed. Academic Press, New York1988
- Scale development: theory and applications.4th ed. Sage, Los Angeles2017
- The Sage dictionary of statistics.Sage, Thousand Oaks, CA2004
- Criteria for assessing the tools of disability outcomes research.Arch Phys Med Rehabil. 2000; 81: S15-S20
- Convergent and discriminant validation by the multitrait-multimethod matrix.Psychol Bull. 1959; 56: 81-105
- The Mayo-Portland Adaptability Inventory.(Available at:) (Accessed July 27, 2017)
- Traumatic brain injury caregivers: a qualitative analysis of spouse and parent perspectives on quality of life.Neuropsychol Rehabil. 2017; 27: 16-37
Article info
Publication history
Published online: July 02, 2018
Footnotes
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 presents a special circumstance when such a product inclusions become an integral part of the scientific endeavor.
Identification
Copyright
© 2018 by the American Congress of Rehabilitation Medicine
