Advertisement
Original article| Volume 96, ISSUE 1, P105-113, January 2015

Download started.

Ok

Health-Related Quality of Life in Caregivers of Individuals With Traumatic Brain Injury: Development of a Conceptual Model

Published:September 17, 2014DOI:https://doi.org/10.1016/j.apmr.2014.08.021

      Abstract

      Objectives

      To identify aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and to propose an integrated conceptual framework based on this information.

      Design

      Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect that caring for an individual with a TBI has on caregiver HRQOL.

      Setting

      University hospitals and rehabilitation treatment centers.

      Participants

      Caregivers (N=55) of individuals with moderate-to-severe TBI.

      Interventions

      Not applicable.

      Main Outcome Measures

      Not applicable.

      Results

      Qualitative analysis indicated that caregivers were most concerned about their social health (42% of comments). Other important issues were emotional health (34%), physical health (11%), cognitive health (3%), and feelings of loss (9%; feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver). Areas of concern that were discussed that were specific to the caregiver and not fully evaluated by existing patient-reported outcomes (PROs) included feelings of loss, anxiety related to the caregiver role (reinjury concerns, worry about leaving the person alone, etc), and caregiver strain (burden, stress, feeling overwhelmed, etc).

      Conclusions

      Although existing PROs capture relevant aspects of HRQOL for caregivers, there are HRQOL domains that are not addressed. A validated and sensitive HRQOL tool for caregivers of individuals with TBI will facilitate initiatives to improve outcomes in this underserved group.

      Keywords

      List of abbreviations:

      HRQOL (health-related quality of life), PRO (patient-reported outcome), PROMIS (Patient Reported Outcomes Measurement Information System), TBI (traumatic brain injury)
      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 access
      One-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 Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Langlois J.A.
        • Rutland-Brown W.
        • Thomas K.E.
        Traumatic brain injury in the United States: emergency department visits, hospitalizations, and deaths.
        Dept of Health and Human Services, Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Atlanta2004
        • Sosin D.M.
        • Sniezek J.E.
        • Waxweiler R.J.
        Trends in death associated with traumatic brain injury, 1979 through 1992. Success and failure.
        JAMA. 1995; 273: 1778-1780
        • Thurman D.
        • Coronado V.
        • Selassie A.W.
        Epidemiology of traumatic brain injury.
        in: Zasler N.D. Katz D.I. Zafonte R.D. Brain injury medicine: principles and practice. 2nd ed. Demos, New York2007: 373-405
        • Langlois J.A.
        • Kegler S.R.
        • Butler J.A.
        • et al.
        Traumatic brain injury-related hospital discharges. Results from a 14-state surveillance system, 1997.
        MMWR Surveill Summ. 2003; 52: 1-20
        • Verhaeghe S.
        • Defloor T.
        • Grypdonck M.
        Stress and coping among families of patients with traumatic brain injury: a review of the literature.
        J Clin Nurs. 2005; 14: 1004-1012
        • Katz S.
        • Kravetz S.
        • Grynbaum F.
        Wives' coping flexibility, time since husbands' injury and the perceived burden of wives of men with traumatic brain injury.
        Brain Inj. 2005; 19: 59-66
        • Anderson M.I.
        • Parmenter T.R.
        • Mok M.
        The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well-being of the spouse/caregiver: path model analysis.
        Brain Inj. 2002; 16: 743-757
        • 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
        • 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
        • 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
        • Livingston M.G.
        • Brooks D.N.
        • Bond M.R.
        Three months after severe head injury: psychiatric and social impact on relatives.
        J Neurol Neurosurg Psychiatry. 1985; 48: 870-875
        • Marsh N.V.
        • Kersel D.A.
        • Havill J.H.
        • Sleigh J.W.
        Caregiver burden at 1 year following severe traumatic brain injury.
        Brain Inj. 1998; 12: 1045-1059
        • McPherson K.M.
        • Pentland B.
        • McNaughton H.K.
        Brain injury - the perceived health of carers.
        Disabil Rehabil. 2000; 22: 683-689
        • Nabors N.
        • Seacat J.
        • Rosenthal M.
        Predictors of caregiver burden following traumatic brain injury.
        Brain Inj. 2002; 16: 1039-1050
        • Rapport L.J.
        • Kreutzer J.S.
        • Hart T.
        • Marwitz J.H.
        • Hammond F.
        Traumatic brain injury caregiver distress and use of support services.
        J Head Trauma Rehabil. 2006; 21: 432-433
        • 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
        • Hanks R.A.
        • Rapport L.J.
        • Vangel S.
        Caregiving appraisal after traumatic brain injury: the effects of functional status, coping style, social support and family functioning.
        NeuroRehabilitation. 2007; 22: 43-52
        • 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
        • Harris J.K.
        • Godfrey H.P.
        • Partridge F.M.
        • Knight R.G.
        Caregiver depression following traumatic brain injury (TBI): a consequence of adverse effects on family members?.
        Brain Inj. 2001; 15: 223-238
        • 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
        • Gan C.
        • Campbell K.A.
        • Gemeinhardt M.
        • McFadden G.T.
        Predictors of family system functioning after brain injury.
        Brain Inj. 2006; 20: 587-600
        • Kozloff R.
        Networks of social support and the outcome from severe head injury.
        J Head Trauma Rehabil. 1987; 2: 14-23
        • Jacobs H.E.
        The Los-Angeles Head-Injury Survey: procedures and initial findings.
        Arch Phys Med Rehabil. 1988; 69: 425-431
        • Lezak M.D.
        Living with the characterologically altered brain injured patient.
        J Clin Psychiatry. 1978; 39: 592-598
        • Thomsen I.V.
        Late outcome of very severe blunt head trauma: a 10-15 year second follow-up.
        J Neurol Neurosurg Psychiatry. 1984; 47: 260-268
        • Ergh T.C.
        • Hanks R.A.
        • Rapport L.J.
        • Coleman R.D.
        Social support moderates caregiver life satisfaction following traumatic brain injury.
        J Clin Exp Neuropsychol. 2003; 25: 1090-1101
        • Kolakowsky-Hayner S.A.
        • Miner K.D.
        • Kreutzer J.S.
        Long-term life quality and family needs after traumatic brain injury.
        J Head Trauma Rehabil. 2001; 16: 374-385
        • 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
        • Florian V.
        • Katz S.
        • Lahav V.
        Impact of traumatic brain damage on family dynamics and functioning: a review.
        Brain Inj. 1989; 3: 219-233
        • 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
        • 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
        • 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
        • Cella D.F.
        Measuring quality of life in palliative care.
        Semin Oncol. 1995; 22: 73-81
        • Derogatis L.R.
        Brief Symptom Inventory 18 (BSI 18): administration, scoring, and procedures manual.
        NCS Pearson, Minneapolis2001
        • Goldberg D.P.
        Manual of the General Health Questionnaire.
        National Foundation for Education Research Publishing, Windsor1978
        • Zarit S.H.
        • Orr N.K.
        • Zarit J.M.
        The hidden victims of Alzheimer's disease: families under stress.
        New York Univ Pr, New York1985
        • Montgomery R.J.
        • Gonyea J.G.
        • Hooyman N.R.
        Caregiving and the experience of subjective and objective burden.
        Fam Relat. 1985; 34: 19-26
        • Knight R.G.
        • Devereux R.C.
        • Godfrey H.P.
        Psychosocial consequences of caring for a spouse with multiple sclerosis.
        J Clin Exp Neuropsychol. 1997; 19: 7-19
        • Brouwer W.B.
        • van Exel N.J.
        • van Gorp B.
        • Redekop W.K.
        The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations.
        Qual Life Res. 2006; 15: 1005-1021
        • Thompson H.J.
        A critical analysis of measures of caregiver and family functioning following traumatic brain injury.
        J Neurosci Nurs. 2009; 41: 148-158
        • Cella D.
        • Riley W.
        • Stone A.
        • et al.
        The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008..
        J Clin Epidemiol. 2010; 63: 1179-1194
        • Cella D.F.
        • 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
        • Cella D.
        • Gershon R.
        • Lai J.S.
        • Choi S.
        The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment..
        Qual Life Res. 2007; 16 Suppl 1: 133-141
        • Rothman M.L.
        • Beltran P.
        • Cappelleri J.C.
        • Lipscomb J.
        • Teschendorf B.
        Patient-reported outcomes: conceptual issues.
        Value Health. 2007; (10 Suppl 2:S66-S75)
        • Turner R.R.
        • Quittner A.L.
        • Parasuraman B.M.
        • Kallich J.D.
        • Cleeland C.S.
        Patient-reported outcomes: instrument development and selection issues.
        Value Health. 2007; (10 Suppl 2:S86-S93)
        • Traumatic Brain Injury Model Systems National Data Center
        Traumatic Brain Injury Model Systems National Data Base Inclusion Criteria.
        2006 (Available at: https://www.tbindsc.org/StaticFiles/Documents/2014%20TBIMS%20Slide%20Presentation.pdf. Accessed October 14, 2014)
        • Basch C.E.
        Focus group interview: an underutilized research technique for improving theory and practice in health education.
        Health Educ Q. 1987; 14: 411-448
        • Zemke R.
        • Kramlinger T.
        Figuring things out.
        Addison-Wesley, Reading1985
        • Carlozzi N.E.
        • Fyffe D.
        • Morin K.G.
        • et al.
        Impact of blood pressure dysregulation on health-related quality of life in persons with spinal cord injury: development of a conceptual model.
        Arch Phys Med Rehabil. 2013; 94: 1721-1730
        • Carlozzi N.E.
        • Tulsky D.S.
        • Kisala P.A.
        Traumatic brain injury patient-reported outcome measure: identification of health-related quality-of-life issues relevant to individuals with traumatic brain injury.
        Arch Phys Med Rehabil. 2011; 92: S52-60
        • Kisala P.
        • Tulsky D.
        Opportunities for CAT applications in medical rehabilitation: development of targeted item banks.
        J Appl Meas. 2010; 11: 315-330
        • Carlozzi N.E.
        • Tulsky D.S.
        Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease.
        J Health Psychol. 2013; 18: 212-225
        • Glaser B.G.
        • Strauss A.L.
        The discovery of grounded theory: strategies for qualitative research.
        Aldine Transaction, New Brunswick1967
        • Strauss A.L.
        • Corbin J.M.
        Basics of qualitative research: techniques and procedures for developing grounded theory.
        2nd ed. Sage, Thousand Oaks1998
      1. Grad FP. The Preamble to the Constitution of the World Health Organization Bulletin of the World Health Organization 2002;80:981-4.

      2. PROMIS Instrument Development and Psychometric Evaluation Scientific Standards. http://www.nihpromis.org/Documents/PROMIS_Standards_050212.pdf?AspxAutoDetectCookieSupport=1. Accessed October 14, 2014.

        • Hahn E.A.
        • Dewalt D.A.
        • Bode R.K.
        • et al.
        New English and Spanish Social Health Measures Will Facilitate Evaluating Health Determinants.
        Health Psychol. 2014; 33: 490-499