1,708
Views
101
CrossRef citations to date
0
Altmetric
Original Article

Quality of life after traumatic brain injury: The clinical use of the QOLIBRI, a novel disease-specific instrument

, MD, , , , , , , , , , , , , , & show all
Pages 1272-1291 | Received 23 Feb 2010, Accepted 04 Jul 2010, Published online: 19 Aug 2010

References

  • Thurman DJ, Alverson C, Dunn KA, Guerreiro J, Sniezek JE. Traumatic brain injury in the United States: A public health perspective. Journal of Head Trauma Rehabilitation 1999; 14: 602–615
  • Tagliaferri F, Compagnone C, Korsic M, Servadei F, Kraus J. A systematic review of brain injury epidemiology in Europe. Acta Neurochirurgica 2006; 148: 255–268, discussion 268
  • Zitnay GA, Zitnay KM, Povlishock JT, Hall ED, Marion DW, Trudel T, Zafonte RD, Zasler N, Nidiffer FD, DaVanzo J, et al. Traumatic brain injury research priorities: The Conemaugh International Brain Injury Symposium. Journal of Neurotrauma 2008; 25: 1135–1152
  • Thompson HJ, McCormick WC, Kagan SH. Traumatic brain injury in older adults: Epidemiology, outcomes, and future implications. Journal of the American Geriatrics Society 2006; 54: 1590–1595
  • Kozlowski O, Pollez B, Thevenon A, Dhellemmes P, Rousseaux M. Outcome and quality of life after three years in a cohort of patients with severe traumatic brain injury. Annales de Readaptation et de Medecine Physique 2002; 45: 466–473
  • Svendsen HA, Teasdale TW. The influence of neuropsychological rehabilitation on symptomatology and quality of life following brain injury: A controlled long-term follow-up. Brain Injury 2006; 20: 1295–1306
  • Wood RL, Rutterford NA. Psychosocial adjustment 17 years after severe brain injury. Journal of Neurology, Neurosurgery and Psychiatry 2006; 77: 71–73
  • WHOQoL Group. Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Quality of Life Research 1993; 2: 153–159
  • Kaplan R, Bush J. Health-related quality of life measurement for evaluation research and policy analysis. Health Psychology 1982; 1: 61–80
  • Patrick DL, Elinson J. Sociomedical approaches to disease and treatment outcomes. Quality of Life and Cardiovascular Care 1984; 1: 53–62
  • Berger E, Leven F, Pirente N, Bouillon B, Neugebauer E. Quality of life after traumatic brain injury: A systematic review of the literature. Restorative Neurology and Neuroscience 1999; 14: 93–102
  • Bullinger M. Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research. Restorative Neurology and Neuroscience 2002; 20: 93–101
  • Findler M, Cantor J, Haddad L, Gordon W, Ashman T. The reliability and validity of the SF-36 health survey questionnaire for use with individuals with traumatic brain injury. Brain Injury 2001; 15: 715–723
  • Neugebauer E, Bouillon B, Bullinger M, Wood-Dauphinee S. Quality of life after multiple trauma–summary and recommendations of the consensus conference. Restorative Neurology and Neuroscience 2002; 20: 161–167
  • Winter V, Powell J, Greenwood R. The problem of quality of life after traumatic brain injury: Conceptual and measurement issues. Acta Neuropsychologica 2005; 3: 36–47
  • Hawthorne G, Gruen RL, Kaye AH. Traumatic brain injury and long-term quality of life: Findings from an Australian study. Journal of Neurotrauma 2009; 26: 1623–1633
  • Nestvold K, Stavem K. Determinants of health-related quality of life 22 years after hospitalization for traumatic brain injury. Brain Injury 2009; 23: 15–21
  • Teasdale TW, Engberg AW. Subjective well-being and quality of life following traumatic brain injury in adults: A long-term population-based follow-up. Brain Injury 2005; 19: 1041–1048
  • Dikmen SS, Machamer JE, Powell JM, Temkin NR. Outcome 3 to 5 years after moderate to severe traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2003; 84: 1449–1457
  • Pierce CA, Hanks RA. Life satisfaction after traumatic brain injury and the World Health Organization model of disability. American Journal of Physical Medicine and Rehabilitation 2006; 85: 889–898
  • Tomberg T, Toomela A, Pulver A, Tikk A. Coping strategies, social support, life orientation and health-related quality of life following traumatic brain injury. Brain Injury 2005; 19: 1181–1190
  • Vickery CD, Gontkovsky ST, Caroselli JS. Self-concept and quality of life following acquired brain injury: A pilot investigation. Brain Injury 2005; 19: 657–665
  • Mailhan L, Azouvi P, Dazord A. Life satisfaction and disability after severe traumatic brain injury. Brain Injury 2005; 19: 227–238
  • McCarthy ML, Dikmen SS, Langlois JA, Selassie AW, Gu JK, Horner MD. Self-reported psychosocial health among adults with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2006; 87: 953–961
  • Steadman-Pare D, Colantonio A, Ratcliff G, Chase S, Vernich L. Factors associated with perceived quality of life many years after traumatic brain injury. Journal of Head Trauma Rehabilitation 2001; 16: 330–342
  • Corrigan JD, Bogner JA, Mysiw WJ, Clinchot D, Fugate L. Life satisfaction after traumatic brain injury. Journal of Head Trauma Rehabilitation 2001; 16: 543–555
  • Baumann CR, Werth E, Stocker R, Ludwig S, Bassetti CL. Sleep-wake disturbances 6 months after traumatic brain injury: A prospective study. Brain 2007; 130: 1873–1883
  • Cantor JB, Ashman T, Gordon W, Ginsberg A, Engmann C, Egan M, Spielman L, Dijkers M, Flanagan S. Fatigue after traumatic brain injury and its impact on participation and quality of life. Journal of Head Trauma Rehabilitation 2008; 23: 41–51
  • Emanuelson I, Andersson Holmkvist E, Bjorklund R, Stalhammar D. Quality of life and post-concussion symptoms in adults after mild traumatic brain injury: A population-based study in western Sweden. Acta Neurologica Scandinavica 2003; 108: 332–338
  • Hillier SL, Sharpe MH, Metzer J. Outcomes 5 years post-traumatic brain injury (with further reference to neurophysical impairment and disability). Brain Injury 1997; 11: 661–675
  • Hibbard MR, Ashman TA, Spielman LA, Chun D, Charatz HJ, Melvin S. Relationship between depression and psychosocial functioning after traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2004; 85: 43–53
  • Branca B, Lake AE. Psychological and neuropsychological integration in multidisciplinary pain management after TBI. Journal of Head Trauma Rehabilitation 2004; 19: 40–57
  • Hoffmann B, Duwecke C, von Wild KR. Neurological and social long-term outcome after early rehabilitation following traumatic brain injury. 5-year report on 240 TBI patients. Acta Neurochirurgica 2002; 79: 33–35
  • Dahlberg C, Hawley L, Morey C, Newman J, Cusick CP, Harrison-Felix C. Social communication skills in persons with post-acute traumatic brain injury: Three perspectives. Brain Injury 2006; 20: 425–435
  • Eriksson G, Kottorp A, Borg J, Tham K. Relationship between occupational gaps in everyday life, depressive mood and life satisfaction after acquired brain injury. Journal of Rehabilitation Medicine 2009; 41: 187–194
  • Oppermann JD. Interpreting the meaning individuals ascribe to returning to work after traumatic brain injury: A qualitative approach. Brain Injury 2004; 18: 941–955
  • Koskinen S. Quality of life 10 years after a very severe traumatic brain injury (TBI): The perspective of the injured and the closest relative. Brain Injury 1998; 12: 631–648
  • Machamer J, Temkin N, Dikmen S. Significant other burden and factors related to it in traumatic brain injury. Journal of Clinical and Experimental Neuropsychology 2002; 24: 420–433
  • Wells R, Dywan J, Dumas J. Life satisfaction and distress in family caregivers as related to specific behavioural changes after traumatic brain injury. Brain Injury 2005; 19: 1105–1115
  • Jorge RE, Robinson RG, Arndt SV, Starkstein SE, Forrester AW, Geisler F. Depression following traumatic brain injury: A 1 year longitudinal study. Journal of Affective Disorders 1993; 27: 233–243
  • Behan LA, Phillips J, Thompson CJ, Agha A. Neuroendocrine disorders after traumatic brain injury. Journal of Neurology, Neurosurgery and Psychiatry 2008; 79: 753–759
  • Kelly DF, McArthur DL, Levin H, Swimmer S, Dusick JR, Cohan P, Wang C, Swerdloff R. Neurobehavioral and quality of life changes associated with growth hormone insufficiency after complicated mild, moderate, or severe traumatic brain injury. Journal of Neurotrauma 2006; 23: 928–942
  • Klose M, Watt T, Brennum J, Feldt-Rasmussen U. Posttraumatic hypopituitarism is associated with an unfavorable body composition and lipid profile, and decreased quality of life 12 months after injury. Journal of Clinical Endocrinology and Metabolism 2007; 92: 3861–3868
  • Silver JM, Kramer R, Greenwald S, Weissman M. The association between head injuries and psychiatric disorders: Findings from the New Haven NIMH Epidemiologic Catchment Area Study. Brain Injury 2001; 15: 935–945
  • Simpson G, Tate R. Suicidality after traumatic brain injury: Demographic, injury and clinical correlates. Psychological Medicine 2002; 32: 687–697
  • Teasdale TW, Engberg AW. Suicide after traumatic brain injury: A population study. Journal of Neurology, Neurosurgery and Psychiatry 2001; 71: 436–440
  • Wasserman L, Shaw T, Vu M, Ko C, Bollegala D, Bhalerao S. An overview of traumatic brain injury and suicide. Brain Injury 2008; 22: 811–819
  • Fleminger S. Long-term psychiatric disorders after traumatic brain injury. European Journal of Anaesthesiology 2008; 25(42)123–130
  • Tedeschi RG, Calhoun LG. Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry 2004; 15: 1–18
  • Hawley CA, Joseph S. Predictors of positive growth after traumatic brain injury: A longitudinal study. Brain Injury 2008; 22: 427–435
  • Formisano R, Matteis T, Bivona U, Ciurli J, Zafonte R. ICU discharge criteria and rehabilitation potential for severe brain injury patients. Critical Care, 4th, A Gabrielli, AJ Layon, M Yu. Lipincott Williams and Wilkins, Philadelphia 2009; 2254–2265
  • Dijkers MP. Quality of life after traumatic brain injury: A review of research approaches and findings. Archives of Physical Medicine and Rehabilitation 2004; 85: 21–35
  • Teasdale G, Jennett B. Assessment of coma and severity of brain damage. Anesthesiology 1978; 49: 225–226
  • Schonle PW, Schwall D. Die KRS – eine Skala zum Monitoring der protrahierten Komaremission in der Fruhrehabilitation. Neurological Rehabilitation 1995; 2: 87–96
  • Giacino JT, Kezmarsky MA, DeLuca J, Cicerone KD. Monitoring rate of recovery to predict outcome in minimally responsive patients. Archives of Physical Medicine and Rehabilitation 1991; 72: 897–901
  • Jennett B, Bond M. Assessment of outcome after severe brain damage. Lancet 1975; 1: 480–484
  • Wilson JT, Pettigrew LE, Teasdale GM. Structured interviews for the Glasgow Outcome Scale and the extended Glasgow Outcome Scale: Guidelines for their use. Journal of Neurotrauma 1998; 15: 573–585
  • Rappaport M, Hall KM, Hopkins K, Belleza T, Cope DN. Disability rating scale for severe head trauma: Coma to community. Archives of Physical Medicine and Rehabilitation 1982; 63: 118–123
  • Malec JF, Thompson JM. Relationship of the Mayo-Portland Adaptability Inventory to functional outcome and cognitive performance measures. Journal of Head Trauma Rehabilitation 1994; 9: 1–15
  • Willer B, Ottenbacher KJ, Coad ML. The community integration questionnaire. A comparative examination. American Journal of Physical Medicine and Rehabilitation 1994; 73: 103–111
  • WHO. International Classification of Functioning, Disability and Health. World Health Organization, Geneva 2001
  • Anstey KJ, Butterworth P, Jorm AF, Christensen H, Rodgers B, Windsor TD. A population survey found an association between self-reports of traumatic brain injury and increased psychiatric symptoms. Journal of Clinical Epidemiology 2004; 57: 1202–1209
  • Brown SA, McCauley SR, Levin HS, Contant C, Boake C. Perception of health and quality of life in minorities after mild-to-moderate traumatic brain injury. Applied Neuropsychology 2004; 11: 54–64
  • Fann JR, Katon WJ, Uomoto JM, Esselman PC. Psychiatric disorders and functional disability in outpatients with traumatic brain injuries. American Journal of Psychiatry 1995; 152: 1493–1499
  • Michaels AJ, Michaels CE, Smith JS, Moon CH, Peterson C, Long WB. Outcome from injury: general health, work status, and satisfaction 12 months after trauma. Journal of Trauma 2000; 48: 841–848, discussion 848–850
  • Paniak C, Phillips K, Toller-Lobe G, Durand A, Nagy J. Sensitivity of three recent questionnaires to mild traumatic brain injury-related effects. Journal of Head Trauma Rehabilitation 1999; 14: 211–219
  • van Baalen B, Odding E, van Woensel MP, Roebroeck ME. Reliability and sensitivity to change of measurement instruments used in a traumatic brain injury population. Clinical Rehabilitation 2006; 20: 686–700
  • Coetzer BR, du Toit PL. Impaired awareness following brain injury and its relationship to placement and employment outcome. Journal of Cognitive Rehabilitation 2002; Summer 2002: 20–24
  • Coetzer R, Rushe R. Post-acute rehabilitation following traumatic brain injury: Are both early and later improved outcomes possible?. International Journal of Rehabilitation Research 2005; 28: 361–363
  • Evans JJ, Wilson BA, Needham P, Brentnall S. Who makes good use of memory aids? Results of a survey of people with acquired brain injury. Journal of the International Neuropsychological Society 2003; 9: 925–935
  • Martin C, Viguier D, Deloche G, Dellatolas G. Subjective experience after traumatic brain injury. Brain Injury 2001; 15: 947–959
  • Mathiesen BB, Weinryb RM. Unstable identity and prefrontal injury. Cognitive Neuropsychiatry 2004; 9: 249–266
  • Schonberger M, Humle F, Zeeman P, Teasdale TW. Patient compliance in brain injury rehabilitation in relation to awareness and cognitive and physical improvement. Neuropsychological Rehabilitation 2006; 16: 561–578
  • Sopena S, Dewar BK, Nannery R, Teasdale TW, Wilson BA. The European Brain Injury Questionnaire (EBIQ) as a reliable outcome measure for use with people with brain injury. Brain Injury 2007; 21: 1063–1068
  • Svendsen HA, Teasdale TW, Pinner M. Subjective experience in patients with brain injury and their close relatives before and after a rehabilitation programme. Neuropsychological Rehabilitation 2004; 14: 495–515
  • Teasdale TW, Christensen AL, Willmes K, Deloche G, Braga L, Stachowiak F, Vendrell JM, Castro-Caldas A, Laaksonen RK, Leclercq M. Subjective experience in brain-injured patients and their close relatives: A European Brain Injury Questionnaire study. Brain Injury 1997; 11: 543–563
  • Bullinger M, the TBI consensus group. Quality of life in patients with traumatic brain injury-basic issues, assessment and recommendations. Restorative Neurology and Neuroscience 2002;20:111–124.
  • Truelle JL. The QOLIBRI story. Acta Neuropsychologica 2005; 3: 6–7
  • von Steinbüchel N, Petersen C, Bullinger M, and the QOLIBRI Group. Assessment of health-related quality of life in persons after traumatic brain injury – development of the QOLIBRI, a specific measure. Acta Neurochirurgica 2005;93:43–49.
  • Truelle JL, von Wild K, Hofer S, Neugebauer E, Lischetzke T, von Steinbuchel N. The QOLIBRI–towards a quality of life tool after traumatic brain injury: Current developments in Asia. Acta Neurochirurgica Supplement 2008; 101: 125–129
  • von Steinbuechel N, Wilson L, Gibbons H, Hawthorne G, Hofer S, Schmidt S, Bullinger M, Maas A, Neugebauer E, Powell J, von Wild K, Zitnay G, Bakx W, Christense AL, Koshinen S, Formisano R, Sarajuuri J, Sasse N, Truelle JL. Quality of Life after Brain Injury (QOLIBRI-TBI) – scale validity and correlates of quality of life. Journal of Neurotrauma. Accepted 6 May 2010.
  • von Steinbuechel N, Wilson L, Gibbons H, Hawthorne G, Hofer S, Schmidt S, Bullinger M, Maas A, Neugebauer E, Powell J, von Wild K, Zitnay G, Bakx W, Christense AL, Koshinen S, Formisano R, Sarajuuri J, Sasse N, Truelle JL. Quality of Life after Brain Injury (QOLIBRI-TBI) – scale development and metric properties. Journal of Neurotrauma. Accepted 6 May 2010.
  • Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 1983; 67: 361–370
  • Snaith R, Zigmond A. The Hospital Anxiety and Depression Scale. NFER-Nelson, Windsor 1994
  • Herrmann C. International experiences with the Hospital Anxiety and Depression Scale–a review of validation data and clinical results. Journal of Psychosomatic Research 1997; 42: 17–41
  • Rothman KJ. No adjustments are needed for multiple comparisons. Epidemiology 1990; 1: 43–46
  • Perneger TV. What's wrong with Bonferroni adjustments. British Medical Journal 1998; 316: 1236–1238
  • SPSS Inc. Statistical Package for the Social Sciences, V15.0. In. 15.0.0 ed. Chicago: SPSS Inc; 2006.
  • Hawthorne G, Osborne R. Population norms and meaningful differences for the Assessment of Quality of Life (AQoL) measure. Australian and New Zealand Journal of Public Health 2005; 29: 136–142
  • Luo N, Johnson JA, Shaw JW, Feeny D, Coons SJ. Self-reported health status of the general adult U.S. population as assessed by the EQ-5D and Health Utilities Index. Medical Care 2005; 43: 1078–1086
  • ABS. National Health Survey: SF-36 Population Norms, Australia. Australia Bureau of Statistics, Canberra 1997
  • Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey: Manual and Interpretation Guide. The Health Institute, New England Medical Centre, Boston 1993
  • Hawthorne G, Herrman H, Murphy B. Interpreting the WHOQOL-Brèf: Preliminary population norms and effect sizes. Social Indicators Research 2006; 77: 37–59
  • English TC. The after-effects of head injuries. Lancet 1904; 20: 485–489
  • Wagner AK, Vickery BG. The routine use of health-related quality of life measures in the care of patients with epilepsy: Rationale and research agenda. Quality of Life Research 1995; 4: 169–177
  • Albrecht GL, Devlieger PJ. The disability paradox: High quality of life against all odds. Social Science and Medicine 1999; 48: 977–988
  • Azouvi P, Dufosse I, Mailhan L, Dazord A. Life satisfaction after severe traumatic brain injury - inverse relationship with disability. Acta Neuropsychologica 2005; 3: 25–35
  • Jacobson N, Traux P. Clinical significance: A statistical approach to defining meaningful change in psychotherapy research. Journal of Consulting and Clinical Psychology 1991; 59: 12–19
  • Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Medical Care 2003; 41: 582–592
  • Johnstone B, Yoon DP, Rupright J, Reid-Arndt S. Relationships among beliefs, religious practices, congregational support and health for individuals with traumatic brain injury. Brain Injury 2009; 23: 411–419
  • Lowe SL, Rhodes JE, Zwiebach L, Chan CS. The impact of pet loss on the perceived social support and psychological distress of hurricane survivors. Journal of Traumatic Stress Studies 2009; 22: 244–247
  • Prigatano GP, Fordyce DJ, Zeiner HK, Roueche JR, Pepping M, Wood BC. Neuropsychological rehabilitation after brain injury. Johns Hopkins University Press, Baltimore 1986
  • Sherer M, Bergloff P, Boake C, High W, Jr, Levin E. The Awareness Questionnaire: Factor structure and internal consistency. Brain Injury 1998; 12: 63–68
  • Bivona U, Ciurli P, Barba C, Onder G, Azicnuda E, Silvestro D, Mangano R, Rigon J, Formisano R. Executive function and metacognitive self-awareness after severe traumatic brain injury. Journal of the International Neuropsychological Society 2008; 14: 862–868
  • Ciurli P, Bivona U, Barba C, Onder G, Silvestro D, Azicnuda E, Rigon J, Formisano R. Metacognitive unawareness correlates with executive function impairment after severe traumatic brain injury. Journal of the International Neuropsychological Society in press.
  • Sansoni J, Marosszeky N, Jeon Y-H, Chenoweth L, Hawthorne G, King M, Budge M, Zapart S, Sansoni E, Senior K, et al. Final Report: Dementia Outcomes Measurement Suite Project. Wollongong: Centre for Health Service Development, University of Wollongong; 2007.
  • Truelle JL, von Steinbüchel N, von Wild K, Höfer S, Neugebauer E, Group Q. What quality of life after traumatic brain injury? QOLIBRI, a disease-specific QoL tool. In: 5th Congress of the World Federation of Neurorehabilitation; 2008 September 24–27; Rio de Janeiro Neurorehabilitation and Neural Repair; 2008. p. 528.
  • Truelle JL, von Wild K, Onillon M, Montreuil M. Social reintegration after traumatic brain injury: the French experience. 7th Annual Conference on Brain Injury North American Brain Injury Society, Austin 14–17 October 2009, Asian Journal of Neurosurgery 2010; 5:24–31.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.