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The Development of a New Computer-Adaptive Test to Evaluate Strain in Caregivers of Individuals With TBI: TBI-CareQOL Caregiver Strain

      Highlights

      • The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) measurement system includes new and existing self-report measures.
      • Measures were developed specific to caring for someone with traumatic brain injury.
      • Generic measures also evaluate important quality of life constructs for caregivers.

      Abstract

      Objective

      To develop a new measure of caregiver strain for use in caregivers of individuals with traumatic brain injury (TBI), Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Caregiver Strain.

      Design

      Qualitative data, literature reviews, and cross-sectional survey study.

      Setting

      Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility.

      Participants

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

      Interventions

      Not applicable.

      Main Outcome Measure

      TBI-CareQOL Caregiver Strain Item Bank.

      Results

      Exploratory and confirmatory factor analyses, a graded response model (GRM) and differential item functioning supported the retention of 33 items in the final measure. GRM calibration data was used to inform the selection of a 6-item static short form, and to program the TBI-CareQOL Caregiver Strain computer-adaptive test (CAT). CAT simulation analyses indicated a 0.97 correlation between the CAT scores and the full item-bank. Three-week test-retest reliability was strong (r=0.83).

      Conclusions

      The new TBI-CareQOL Caregiver Strain CAT and corresponding 6-item short form were developed using established rigorous measurement development standards; this is the first self-reported measure developed to evaluate caregiver strain in caregivers of individuals with TBI.

      Keywords

      List of abbreviations:

      CAT (computer adaptive test), CFA (confirmatory factor analysis), CFI (comparative fit index), DIF (differential item functioning), EFA (exploratory factor analysis), GRM (graded response model), HRQOL (health-related quality of life), IRT (item response theory), PRO (patient-reported outcome), PROMIS (Patient-Reported Outcomes Measurement Information System), RMSEA (root mean squared error of approximation), SF (short form), SMV (service member/veteran), TBI (traumatic brain injury), TBI-CareQOL (Traumatic Brain Injury Caregiver Quality of Life), TLI (Tucker-Lewis index)
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      References

        • Ponsford J.
        • Schonberger M.
        Family functioning and emotional state two and five years after traumatic brain injury.
        J Int Neuropsychol Soc. 2010; 16: 306-317
        • Brooks N.
        • Campsie L.
        • Symington C.
        • Beattie A.
        • McKinlay W.
        The five year outcome of severe blunt head injury: a relative's view.
        J Neurol Neurosurg Psychiatry. 1986; 49: 764-770
        • Brooks N.
        • Campsie L.
        • Symington C.
        • Beattie A.
        • McKinlay W.
        The effects of severe head injury on patient and relatives within seven years of injury.
        J Head Trauma Rehabil. 1987; 2: 1-13
        • Kreutzer J.S.
        • Gervasio A.H.
        • Camplair P.S.
        Primary caregivers' psychological status and family functioning after traumatic brain injury.
        Brain Inj. 1994; 8: 197-210
        • Kreutzer J.S.
        • Rapport L.J.
        • Marwitz J.H.
        • et al.
        Caregivers' well-being after traumatic brain injury: a multicenter prospective investigation.
        Arch Phys Med Rehabil. 2009; 90: 939-946
        • Livingston M.G.
        • Brooks D.N.
        • Bond M.R.
        Patient outcome in the year following severe head injury and relatives' psychiatric and social functioning.
        J Neurol Neurosurg Psychiatry. 1985; 48: 876-881
        • Marsh N.V.
        • Kersel D.A.
        • Havill J.A.
        • Sleigh J.W.
        Caregiver burden during the year following severe traumatic brain injury.
        J Clin Exp Neuropsychol. 2002; 24: 434-447
        • Gillen R.
        • Tennen H.
        • Affleck G.
        • Steinpreis R.
        Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury.
        J Head Trauma Rehabil. 1998; 13: 31-43
        • Winstanley J.
        • Simpson G.
        • Tate R.
        • Myles B.
        Early indicators and contributors to psychological distress in relatives during rehabilitation following severe traumatic brain injury: findings from the Brain Injury Outcomes Study.
        J Head Trauma Rehabil. 2006; 21: 453-466
        • Sayer N.A.
        • Chiros C.E.
        • Sigford B.
        • et al.
        Characteristics and rehabilitation outcomes among patients with blast and other injuries sustained during the Global War on Terror.
        Arch Phys Med Rehabil. 2008; 89: 163-170
        • Pugh M.J.
        • Finley E.P.
        • Copeland L.A.
        • et al.
        Complex comorbidity clusters in OEF/OIF veterans: the polytrauma clinical triad and beyond.
        Med Care. 2014; 52: 172-181
        • Dillahunt-Aspillaga C.
        • Powell-Cope G.
        Community reintegration, participation, and employment issues in veterans and service members with traumatic brain injury.
        Arch Phys Med Rehabil. 2018; 99: S1-S3
        • Grandhi R.
        • Tavakoli S.
        • Ortega C.
        • Simmonds M.J.
        A review of chronic pain and cognitive, mood, and motor dysfunction following mild traumatic brain injury: complex, comorbid, and/or overlapping conditions?.
        Brain Sci. 2017; 7
        • Howrey B.T.
        • Graham J.E.
        • Pappadis M.R.
        • Granger C.V.
        • Ottenbacher K.J.
        Trajectories of functional change after inpatient rehabilitation for traumatic brain injury.
        Arch Phys Med Rehabil. 2017; 98: 1606-1613
        • Sashika H.
        • Takada K.
        • Kikuchi N.
        Rehabilitation needs and participation restriction in patients with cognitive disorder in the chronic phase of traumatic brain injury.
        Med (Baltimore). 2017; 96: e5968
        • Perlesz A.
        • Kinsella G.
        • Crowe S.
        Psychological distress and family satisfaction following traumatic brain injury: injured individuals and their primary, secondary, and tertiary carers.
        J Head Trauma Rehabil. 2000; 15: 909-929
        • Ponsford J.
        • Olver J.
        • Ponsford M.
        • Nelms R.
        Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided.
        Brain Inj. 2003; 17: 453-468
        • Sander A.M.
        • Sherer M.
        • Malec J.F.
        • et al.
        Preinjury emotional and family functioning in caregivers of persons with traumatic brain injury.
        Arch Phys Med Rehabil. 2003; 84: 197-203
        • Davis L.C.
        • Sander A.M.
        • Struchen M.A.
        • Sherer M.
        • Nakase-Richardson R.
        • Malec J.F.
        Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.
        J Head Trauma Rehabil. 2009; 24: 145-154
        • Jacobs H.E.
        The Los Angeles Head Injury Survey: procedures and initial findings.
        Arch Phys Med Rehabil. 1988; 69: 425-431
        • Hart T.
        • Millis S.
        • Novack T.
        • Englander J.
        • Fidler-Sheppard R.
        • Bell K.R.
        The relationship between neuropsychologic function and level of caregiver supervision at 1 year after traumatic brain injury.
        Arch Phys Med Rehabil. 2003; 84: 221-230
        • Bailey E.K.
        • Nakase-Richardson R.
        • Patel N.
        • et al.
        Supervision needs following veteran and service member moderate to severe traumatic brain injury: a VA TBI model systems study.
        J Head Trauma Rehabil. 2017; 32: 245-254
        • Hall K.M.
        • Bushnik T.
        • Lakisic-Kazazic B.
        • Wright J.
        • Cantagallo A.
        Assessing traumatic brain injury outcome measures for long-term follow-up of community-based individuals.
        Arch Phys Med Rehabil. 2001; 82: 367-374
        • Doctor J.N.
        • Castro J.
        • Temkin N.R.
        • Fraser R.T.
        • Machamer J.E.
        • Dikmen S.S.
        Workers' risk of unemployment after traumatic brain injury: a normed comparison.
        J Int Neuropsychol Soc. 2005; 11: 747-752
        • Malec J.F.
        • Moessner A.M.
        Replicated positive results for the VCC model of vocational intervention after ABI within the social model of disability.
        Brain Inj. 2006; 20: 227-236
        • Murphy L.
        • Chamberlain E.
        • Weir J.
        • Berry A.
        • Nathaniel-James D.
        • Agnew R.
        Effectiveness of vocational rehabilitation following acquired brain injury: preliminary evaluation of a UK specialist rehabilitation programme.
        Brain Inj. 2006; 20: 1119-1129
        • Dillahunt-Aspillaga C.
        • Nakase-Richardson R.
        • Hart T.
        • et al.
        Predictors of employment outcomes in veterans with traumatic brain injury: a VA traumatic brain injury model systems study.
        J Head Trauma Rehabil. 2017; 32: 271-282
        • Phelan S.M.
        • Griffin J.M.
        • Hellerstedt W.L.
        • et al.
        Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury.
        Disabil Health J. 2011; 4: 177-184
        • Kreutzer J.
        • Serio C.
        • Bergquist S.
        Family needs after brain injury: a quantitative analysis.
        J Head Trauma Rehabil. 1994; 9: 104-115
        • Witol A.D.
        • Sander A.M.
        • Kreutzer J.S.
        A longitudinal analysis of family needs following traumatic brain injury.
        NeuroRehabilitation. 1996; 7: 175-187
        • Serio C.
        • Kreutzer J.
        • Gervasio A.
        Predicting family needs after traumatic brain injury: implications for intervention.
        J Head Trauma Rehabil. 1995; 10: 32-45
        • Manskow U.S.
        • Friborg O.
        • Roe C.
        • Braine M.
        • Damsgard E.
        • Anke A.
        Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury: a Norwegian longitudinal study.
        NeuroRehabilitation. 2017; 40: 211-222
        • Manskow U.S.
        • Sigurdardottir S.
        • Roe C.
        • et al.
        Factors affecting caregiver burden 1 year after severe traumatic brain injury: a prospective nationwide multicenter study.
        J Head Trauma Rehabil. 2015; 30: 411-423
        • Brooks D.N.
        • Aughton M.E.
        Psychological consequences of blunt head injury.
        Int Rehabil Med. 1979; 1: 160-165
        • Chou K.-R.
        • Chu H.
        • Tseng C.
        • Lu R.-B.
        The measurement of caregiver burden.
        J Med Sci. 2003; 23: 73-82
        • Bastawrous M.
        Caregiver burden: a critical discussion.
        International J Nurs Studies. 2013; 50: 431-441
        • Brooks D.N.
        The head-injured family.
        J Clin Exp Neuropsychol. 1991; 13: 155-188
        • McKinlay W.
        • Brooks D.
        • Bond M.
        The short term outcome of severe blunt head injury as reported by the relatives of the injured person.
        J Neurol Neurosurg Psychiatry. 1981; 44: 527-533
        • George L.K.
        • Gwyther L.P.
        Caregiver well-being: a multidimensional examination of family caregivers of demented adults.
        Gerontologist. 1986; 26: 253-259
        • Marsh N.V.
        • Kersel D.A.
        • Havill J.H.
        • Sleigh J.W.
        Caregiver burden at 6 months following severe traumatic brain injury.
        Brain Inj. 1998; 12: 225-238
        • Novak M.
        • Guest C.
        Application of a multidimensional caregiver burden inventory.
        Gerontologist. 1989; 29: 798-803
        • Montgomery R.J.V.
        • Gonyea J.G.
        • Hooyman N.R.
        Caregiving and the experience of subjective and objective burden.
        Family Relations. 1985; 34: 19-26
        • Zarit S.H.
        • Reever K.E.
        • Bach-Peterson J.
        Relatives of the impaired elderly: correlates of feelings of burden.
        Gerontologist. 1980; 20: 649-655
        • Lawton M.P.
        • Kleban M.H.
        • Moss M.
        • Rovine M.
        • Glicksman A.
        Measuring caregiving appraisal.
        J Gerontology. 1989; 44: P61-P71
        • Struchen M.A.
        • Atchison T.B.
        • Roebuck T.M.
        • Caroselli J.S.
        • Sander A.M.
        A multidimensional measure of caregiving appraisal: validation of the Caregiver Appraisal Scale in traumatic brain injury.
        J Head Trauma Rehabil. 2002; 17: 132-154
        • Taylor C.A.
        • Bell J.M.
        • Breiding M.J.
        • Xu L.
        Traumatic brain injury-related emergency department visits, hospitalizations, and deaths. United States, 2007 and 2013.
        MMWR Surveill Summ. 2017; 66: 1-16
        • Faul M.
        • Coronado V.
        Epidemiology of traumatic brain injury.
        Handb Clin Neurol. 2015; 127: 3-13
        • Faul M.
        • Xu L.
        • Wald M.M.
        • Coronado V.G.
        Traumatic brain injury in the United States: Emergency department visits, hospitalizations and deaths 2002-2006.
        Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Atlanta2010
        • Prince M.
        • Bryce R.
        • Albanese E.
        • Wimo A.
        • Ribeiro W.
        • Ferri C.P.
        The global prevalence of dementia: a systematic review and metaanalysis.
        Alzheimers Dement. 2013; 9: 63-75
        • Zakzanis K.K.
        • Leach L.
        • Kaplan E.
        Studies on neuropsychology, development, and cognition. Neuropsychological differential diagnosis.
        Swets & Zeitlinger Publishers, Lisse, Netherlands1999
        • Lezak M.D.
        • Howieson D.B.
        • Loring D.W.
        Neuropsychological assessment.
        4th ed. Oxford University Press, NY, NY2004
        • Cella D.
        • Riley W.
        • Stone A.
        • et al.
        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
        • Cella D.
        • Yount S.
        • Rothrock N.
        • et al.
        The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.
        Med Care. 2007; 45: S3-S11
      1. PROMIS® Instrument Development and Psychometric Evaluation Scientific Standards. http://www.nihpromis.org/Documents/PROMIS_Standards_050212.pdf.

        • Reeve B.B.
        • Hays R.D.
        • Bjorner J.B.
        • et al.
        Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS).
        Med Care. 2007; 45: S22-S31
        • Cook K.F.
        • Teal C.R.
        • Bjorner J.B.
        • et al.
        IRT health outcomes data analysis project: an overview and summary.
        Qual Life Res. 2007; 16: 121-132
        • Carlozzi N.E.
        • Kallen M.A.
        • Hanks R.
        • et al.
        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
        • Hanauer D.A.
        • Mei Q.
        • Law J.
        • Khanna R.
        • Zheng K.
        Supporting information retrieval from electronic health records: a report of University of Michigan's nine-year experience in developing and using the Electronic Medical Record Search Engine (EMERSE).
        J Biomed Informatics. 2015; 55: 290-300
        • Corrigan J.D.
        • Cuthbert J.P.
        • Whiteneck G.G.
        • et al.
        Representativeness of the Traumatic Brain Injury Model Systems National Database.
        J Head Trauma Rehabil. 2012; 27: 391-403
        • Carlozzi N.E.
        • Brickell T.A.
        • French L.M.
        • et al.
        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
        • Carlozzi N.E.
        • Kratz A.L.
        • Sander A.M.
        • et al.
        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
        • Lai J.S.
        • Cella D.
        • Choi S.
        • et al.
        How item banks and its applications can influence measurement practice in rehabilitation medicine: a PROMIS fatigue item bank example.
        Arch Phys Med Rehabil. 2011; 92: S20-S27
        • McDonald R.P.
        Test theory: a unified treatment.
        Lawrence Erlbaum Associates, Inc., Mahwah, NJ1999
        • Reise S.P.
        • Morizot J.
        • Hays R.D.
        The role of the bifactor model in resolving dimensionality issues in health outcomes measures.
        Qual Life Res. 2007; 16: 19-31
        • Cook K.F.
        • Kallen M.A.
        • Amtmann D.
        Having a fit: impact of number of items and distribution of data on traditional criteria for assessing IRT's unidimensionality assumption.
        Qual Life Res. 2009; 18: 447-460
        • Samejima F.
        • van der Liden W.J.
        • Hambleton R.
        The graded response model.
        in: van der Liden W.J. Handbook of modern item response theory. Springer, New York1996: 85-100
        • Crane P.K.
        • Gibbons L.E.
        • Jolley L.
        • van Belle G.
        Differential item functioning analysis with ordinal logistic regression techniques.
        DIFdetect and difwithpar. Med Care. 2006; 44: S115-S123
        • Kline R.B.
        Principles and practice of structural equation modeling, 2nd ed..
        Guilford Press, New York2005
        • Bentler P.M.
        comparative fit indexes in structural models.
        Psychol Bull. 1990; 107: 238-246
        • Hu L.T.
        • Bentler P.M.
        Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives.
        Struct Equ Modeling. 1999; 6: 1-55
        • Hatcher L.
        A step-by-step approach to using SAS for factor analysis and structural equation modeling.
        SAS Institute, Inc., Cary, NC1994
        • Clauser B.E.
        • Hambleton R.K.
        Review of Differential Item Functioning, P. W. Holland, H. Wainer.
        J Educ Meas. 1994; 31: 88-92
        • DVBIC
        DoD worldwide numbers for TBI.
        (Available at:) (Accessed February 10, 2017)
        • Smith A.M.
        • Schwirian P.M.
        The relationship between caregiver burden and TBI survivors' cognition and functional ability after discharge.
        Rehabil Nurs. 1998; 23: 252-257
        • Vangel Jr., S.J.
        • Rapport L.J.
        • Hanks R.A.
        Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury.
        J Head Trauma Rehabil. 2011; 26: 20-29
        • Florian V.
        • Katz S.
        • Lahav V.
        Impact of traumatic brain damage on family dynamics and functioning: a review.
        Brain Inj. 1989; 3: 219-233
        • McLaughlin A.M.
        • Carey J.L.
        The adversarial alliance: developing therapeutic relationships between families and the team in brain injury rehabilitation.
        Brain Inj. 1993; 7: 45-51
        • Pelletier P.M.
        • Alfano D.P.
        Depression, social support, and family coping following traumatic brain injury.
        Brain Cognition. 2000; 44: 45-49
        • Sander A.M.
        • Caroselli J.S.
        • High W.M.
        • Becker C.
        • Neese L.
        • Scheibel R.
        Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury.
        Brain Inj. 2002; 16: 649-657
        • Sander A.M.
        • Maestas K.L.
        • Sherer M.
        • Malec J.F.
        • Nakase-Richardson R.
        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
        • Sady M.D.
        • Sander A.M.
        • Clark A.N.
        • Sherer M.
        • Nakase-Richardson R.
        • Malec J.F.
        Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury.
        Arch Phys Med Rehabil. 2010; 91: 1542-1550