Assessment of Health-Related Quality of Life after TBI: Comparison of a Disease-Specific (QOLIBRI) with a Generic (SF-36) Instrument

Nicole von Steinbuechel, Amra Covic, Suzanne Polinder, Thomas Kohlmann, Ugne Cepulyte, Herbert Poinstingl, Joy Backhaus, Wilbert Bakx, Monika Bullinger, Anne-Lise Christensen, Rita Formisano, Henning Gibbons, Stefan Höfer, Sanna Koskinen, Andrew Maas, Edmund Neugebauer, Jane Powell, Jaana Sarajuuri, Nadine Sasse, Silke Schmidt, Holger Mühlan, Klaus von Wild, George Zitnay, Jean-Luc Truelle, Nicole von Steinbuechel, Amra Covic, Suzanne Polinder, Thomas Kohlmann, Ugne Cepulyte, Herbert Poinstingl, Joy Backhaus, Wilbert Bakx, Monika Bullinger, Anne-Lise Christensen, Rita Formisano, Henning Gibbons, Stefan Höfer, Sanna Koskinen, Andrew Maas, Edmund Neugebauer, Jane Powell, Jaana Sarajuuri, Nadine Sasse, Silke Schmidt, Holger Mühlan, Klaus von Wild, George Zitnay, Jean-Luc Truelle

Abstract

Psychosocial, emotional, and physical problems can emerge after traumatic brain injury (TBI), potentially impacting health-related quality of life (HRQoL). Until now, however, neither the discriminatory power of disease-specific (QOLIBRI) and generic (SF-36) HRQoL nor their correlates have been compared in detail. These aspects as well as some psychometric item characteristics were studied in a sample of 795 TBI survivors. The Shannon H (') index absolute informativity, as an indicator of an instrument's power to differentiate between individuals within a specific group or health state, was investigated. Psychometric performance of the two instruments was predominantly good, generally higher, and more homogenous for the QOLIBRI than for the SF-36 subscales. Notably, the SF-36 "Role Physical," "Role Emotional," and "Social Functioning" subscales showed less satisfactory discriminatory power than all other dimensions or the sum scores of both instruments. The absolute informativity of disease-specific as well as generic HRQoL instruments concerning the different groups defined by different correlates differed significantly. When the focus is on how a certain subscale or sum score differentiates between individuals in one specific dimension/health state, the QOLIBRI can be recommended as the preferable instrument.

Figures

Figure 1
Figure 1
Shannon indices H′ (confidence intervals 95%) of all QOLIBRI and SF-36 subscales, QOLIBRI Total score and summary scores.
Figure 2
Figure 2
Shannon indices H′ (confidence intervals 95%) of all QOLIBRI and SF-36 subscales, QOLIBRI Total score and MCS and PCS for the correlates: Help Needed and Social Activities.
Figure 3
Figure 3
Shannon indices H′ (confidence intervals 95%) of all QOLIBRI and SF-36 subscales, QOLIBRI Total score and MCS and PCS for the correlates: Comorbidity, Sensory/Psychosomatic and Motor/Skeletal Complaints.
Figure 4
Figure 4
Shannon indices H′ (confidence intervals 95%) of all QOLIBRI and SF-36 subscales, QOLIBRI Total score and MCS and PCS for the correlate GOSE scores.
Figure 5
Figure 5
Shannon indices H′ (confidence intervals 95%) of all QOLIBRI and SF-36 subscales, QOLIBRI Total score and MCS and PCS for the correlate HADS Depression scores.
Figure 6
Figure 6
Shannon indices H′ (confidence intervals 95%) of all QOLIBRI and SF-36 subscales, QOLIBRI Total score and PCS and MCS for the correlate HADS Anxiety scores.

References

    1. Morton M. V., Wehman P. Psychosocial and emotional sequelae of individuals with traumatic brain injury: a literature review and recommendations. Brain Injury. 1995;9(1):81–92. doi: 10.3109/02699059509004574.
    1. Yuh E. L., Mukherjee P., Lingsma H. F., et al. Magnetic resonance imaging improves 3-month outcome prediction in mild traumatic brain injury. Annals of Neurology. 2013;73(2):224–235. doi: 10.1002/ana.23783.
    1. Nutt D. J., Malizia A. L. Structural and functional brain changes in posttraumatic stress disorder. Journal of Clinical Psychiatry. 2004;65(supplement 1):11–17.
    1. Bullinger M., von Steinbüchel N. Measurement of outcome. Comprehensive Care for People with Epilepsy. 2001;16:p. 277.
    1. Polinder S., Haagsma J. A., van Klaveren D., Steyerberg E. W., van Beeck E. F. Health-related quality of life after TBI: a systematic review of study design, instruments, measurement properties, and outcome. Population Health Metrics. 2015;13(1, article 4) doi: 10.1186/s12963-015-0037-1.
    1. von Steinbuechel N., Richter S., Morawetz C., Riemsma R. Assessment of subjective health and health-related quality of life in persons with acquired or degenerative brain injury. Current Opinion in Neurology. 2005;18(6):681–691. doi: 10.1097/01.wco.0000194140.56429.75.
    1. 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. Medical Care. 2007;45(5, supplement 1):3S3–S11. doi: 10.1097/01.mlr.0000258615.42478.55.
    1. Gershon R. C., Lai J. S., Bode R., et al. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Quality of Life Research. 2012;21(3):475–486. doi: 10.1007/s11136-011-9958-8.
    1. 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) Medical Care. 2007;45(5):S22–S31. doi: 10.1097/01.mlr.0000250483.85507.04.
    1. 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. Journal of Clinical Epidemiology. 2010;63(11):1179–1194. doi: 10.1016/j.jclinepi.2010.04.011.
    1. Perez L., Huang J., Jansky L., et al. Using focus groups to inform the neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions. Journal of Neuroscience Nursing. 2007;39(6):342–353.
    1. Hawthorne G., Gruen R. L., Kaye A. H. Traumatic brain injury and long-term quality of life: findings from an Australian study. Journal of Neurotrauma. 2009;26(10):1623–1633. doi: 10.1089/neu.2008.0735.
    1. 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. Archives of Physical Medicine and Rehabilitation. 2011;92(10):S52–S60. doi: 10.1016/j.apmr.2010.12.046.
    1. Emanuelson I., Andersson Holmkvist E., Björklund R., Stålhammar 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(5):332–338. doi: 10.1034/j.1600-0404.2003.00155.x.
    1. Dijkers M. P. Quality of life after traumatic brain injury: a review of research approaches and findings. Archives of Physical Medicine and Rehabilitation. 2004;85(supplement 2):21–35. doi: 10.1016/j.apmr.2003.08.119.
    1. von Steinbüchel N., Wilson L., Gibbons H., et al. Quality of Life after Brain Injury (QOLIBRI): scale development and metric properties. Journal of Neurotrauma. 2010;27(7):1167–1185. doi: 10.1089/neu.2009.1076.
    1. von Steinbüchel N., Wilson L., Gibbons H., et al. Quality of Life after Brain Injury (QOLIBRI): scale validity and correlated of quality of life. Journal of Neurotrauma. 2010;27(7):1157–1165.
    1. Giustini M., Longo E., Azicnuda E., et al. Health-related quality of life after traumatic brain injury: Italian validation of the QOLIBRI. Functional Neurology. 2014;29(3):167–176. doi: 10.11138/fneur/2014.29.3.167.
    1. Lin Y.-N., Chu S.-F., Liang W.-M., Chiu W.-T., Lin M.-R. Validation of the quality of life after brain injury in Chinese persons with traumatic brain injury in Taiwan. The Journal of Head Trauma Rehabilitation. 2014;29(1):E37–E47. doi: 10.1097/htr.0b013e3182816363.
    1. Soberg H. L., Røe C., Anke A., et al. Health-related quality of life 12 months after severe traumatic brain injury: a prospective nationwide cohort study. Journal of Rehabilitation Medicine. 2013;45(8):785–791. doi: 10.2340/16501977-1158.
    1. Sukraeny N., Songwathana P., Sae-Sia W. Quality of life among traumatic brain injury survivors in indonesia: a preliminary study. Songklanagarind Journal of Nursing. 2014;34(supplement):p. 119.
    1. Siponkoski S.-T., Wilson L., Steinbüchel N. V., Sarajuuri J., Koskinen S. Quality of life after traumatic brain injury: finnish experience of the qolibri in residential rehabilitation. Journal of Rehabilitation Medicine. 2013;45(8):835–842. doi: 10.2340/16501977-1189.
    1. Pagulayan K. F., Temkin N. R., Machamer J., Dikmen S. S. A longitudinal study of health-related quality of life after traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 2006;87(5):611–618. doi: 10.1016/j.apmr.2006.01.018.
    1. McCarthy M. L., MacKenzie E. J., Durbin D. R., et al. Health-related quality of life during the first year after traumatic brain injury. Archives of Pediatrics & Adolescent Medicine. 2006;160(3):252–260. doi: 10.1001/archpedi.160.3.252.
    1. Stålnacke B.-M. Community integration, social support and life satisfaction in relation to symptoms 3 years after mild traumatic brain injury. Brain Injury. 2007;21(9):933–942. doi: 10.1080/02699050701553189.
    1. Diaz A. P., Schwarzbold M. L., Thais M. E., et al. Psychiatric disorders and health-related quality of life after severe traumatic brain injury: a prospective study. Journal of Neurotrauma. 2012;29(6):1029–1037. doi: 10.1089/neu.2011.2089.
    1. Haagsma J. A., Scholten A. C., Andriessen T. M., Vos P. E., Van Beeck E. F., Polinder S. Impact of depression and post-traumatic stress disorder on functional outcome and health-related quality of life of patients with mild traumatic brain injury. Journal of Neurotrauma. 2015;32(11):853–862. doi: 10.1089/neu.2013.3283.
    1. Sullivan-Singh S. J., Sawyer K., Ehde D. M., et al. Comorbidity of pain and depression among persons with traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 2014;95(6):1100–1105. doi: 10.1016/j.apmr.2014.02.001.
    1. Almeida O. P., Hankey G. J., Yeap B. B., Golledge J., Flicker L. Prevalence, associated factors, mood and cognitive outcomes of traumatic brain injury in later life: the Health in Men Study (HIMS) International Journal of Geriatric Psychiatry. 2015;30(12):1215–1223. doi: 10.1002/gps.4276.
    1. Andelic N., Hammergren N., Bautz-Holter E., Sveen U., Brunborg C., Røe C. Functional outcome and health-related quality of life 10 years after moderate-to-severe traumatic brain injury. Acta Neurologica Scandinavica. 2009;120(1):16–23. doi: 10.1111/j.1600-0404.2008.01116.x.
    1. 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(8):715–723. doi: 10.1080/02699050118193.
    1. MacKenzie E. J., McCarthy M. L., Ditunno J. F., et al. Using the SF-36 for characterizing outcome after multiple trauma involving head injury. Journal of Trauma—Injury, Infection and Critical Care. 2002;52(3):527–534. doi: 10.1097/00005373-200203000-00018.
    1. Janssen M. F., Birnie E., Haagsma J. A., Bonsel G. J. Comparing the standard EQ-5D three-level system with a five-level version. Value in Health. 2008;11(2):275–284. doi: 10.1111/j.1524-4733.2007.00230.x.
    1. Janssen M. F., Birnie E., Bonsel G. J. Evaluating the discriminatory power of EQ-5D, HUI2 and HUI3 in a US general population survey using Shannon's indices. Quality of Life Research. 2007;16(5):895–904. doi: 10.1007/s11136-006-9160-6.
    1. Polinder S., Haagsma J. A., Bonsel G., Essink-Bot M.-L., Toet H., van Beeck E. F. The measurement of long-term health-related quality of life after injury: comparison of EQ-5D and the health utilities index. Injury Prevention. 2010;16(3):147–153. doi: 10.1136/ip.2009.022418.
    1. Wilson J. T. L., Pettigrew L. E. L., Teasdale G. M. Structured interviews for the glasgow outcome scale and the extended glasgow outcome scale: guidelines for their use. Journal of Neurotrauma. 1998;15(8):573–585. doi: 10.1089/neu.1998.15.573.
    1. Power M., Quinn K., Schmidt S. Development of the WHOQOL-old module. Quality of Life Research. 2005;14(10):2197–2214. doi: 10.1007/s11136-005-7380-9.
    1. Teasdale G., Jennett B. Assessment of coma and impaired consciousness: a practical scale. The Lancet. 1974;304(7872):81–84. doi: 10.1016/s0140-6736(74)91639-0.
    1. Zigmond A. S., Snaith R. P. The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica. 1983;67(6):361–370. doi: 10.1111/j.1600-0447.1983.tb09716.x.
    1. Olssøn I., Mykletun A., Dahl A. A. The hospital anxiety and depression rating scale: a cross-sectional study of psychometrics and case finding abilities in general practice. BMC Psychiatry. 2005;5(1):p. 46. doi: 10.1186/1471-244x-5-46.
    1. Ware J. E., Snow K. K., Kosinski M., Gandek B. Manual and Interpretation Guide. Boston, Mass, USA: The Health Institute, New England Medical Center; 1993.
    1. Lilliefors H. W. On the Kolmogorov-Smirnov test for normality with mean and variance unknown. Journal of the American Statistical Association. 1967;62(318):399–402. doi: 10.1080/01621459.1967.10482916.
    1. Royston P. Approximating the Shapiro-Wilk W-test for non-normality. Statistics and Computing. 1992;2(3):117–119. doi: 10.1007/bf01891203.
    1. Conover W. J., Iman R. L. Rank transformations as a bridge between parametric and nonparametric statistics. The American Statistician. 1981;35(3):p. 124. doi: 10.2307/2683975.
    1. Shannon C. E. A mathematical theory of communication. The Bell System Technical Journal. 1948;27(3):379–423. doi: 10.1002/j.1538-7305.1948.tb01338.x.
    1. George D., Mallery P. SPSS for Windows Step by Step. A Simple Guide and Reference. Boston, Mass, USA: Pearson Higher Education; 2010.
    1. Nunnally J. C. Psychometric Theory. New York, NY, USA: McGraw-Hill; 1978.
    1. Scholten A. C., Haagsma J. A., Andriessen T. M., et al. Health-related quality of life after mild, moderate and severe traumatic brain injury: patterns and predictors of suboptimal functioning during the first year after injury. Injury. 2015;46(4):616–624. doi: 10.1016/j.injury.2014.10.064.
    1. Forslund M. V., Roe C., Sigurdardottir S., Andelic N. Predicting health-related quality of life 2 years after moderate-to-severe traumatic brain injury. Acta Neurologica Scandinavica. 2013;128(4):220–227. doi: 10.1111/ane.12130.
    1. Jacobsson L. J., Westerberg M., Lexell J. Health-related quality-of-life and life satisfaction 6–15 years after traumatic brain injuries in northern Sweden. Brain Injury. 2010;24(9):1075–1086. doi: 10.3109/02699052.2010.494590.
    1. Grauwmeijer E., Heijenbrok-Kal M. H., Ribbers G. M. Health-related quality of life 3 years after moderate to severe traumatic brain injury: a prospective cohort study. Archives of Physical Medicine and Rehabilitation. 2014;95(7):1268–1276. doi: 10.1016/j.apmr.2014.02.002.
    1. Sasse N., Gibbons H., Wilson L., et al. Self-awareness and health-related quality of life after traumatic brain injury. Journal of Head Trauma Rehabilitation. 2013;28(6):464–472. doi: 10.1097/HTR.0b013e318263977d.
    1. Schriesheim C. A., Hill K. D. Controlling acquiescence response bias by item reversals: the effect on questionnaire validity. Educational and Psychological Measurement. 1981;41(4):1101–1114.
    1. Williamson M. L., Elliott T. R., Bogner J., et al. Trajectories of life satisfaction over the first 10 years after traumatic brain injury: race, gender, and functional ability. The Journal of Head Trauma Rehabilitation. 2015 doi: 10.1097/HTR.0000000000000111.
    1. Sumowski J. F., Chiaravalloti N., Krch D., Paxton J., DeLuca J. Education attenuates the negative impact of traumatic brain injury on cognitive status. Archives of Physical Medicine and Rehabilitation. 2013;94(12):2562–2564. doi: 10.1016/j.apmr.2013.07.023.
    1. Hibbard M. R., Ashman T. A., Spielman L. A., Chun D., Charatz H. J., Melvin S. Relationship between depression and psychosocial functioning after traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 2004;85(2):S43–S53. doi: 10.1016/j.apmr.2003.08.116.
    1. Dikmen S. S., Machamer J. E., Powell J. M., Temkin N. R. Outcome 3 to 5 years after moderate to severe traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 2003;84(10):1449–1457. doi: 10.1016/S0003-9993(03)00287-9.
    1. Mazaux J.-M., Masson F., Levin H. S., Alaoui P., Maurette P., Barat M. Long-term neuropsychological outcome and loss of social autonomy after traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 1997;78(12):1316–1320. doi: 10.1016/s0003-9993(97)90303-8.
    1. Ponsford J. L., Olver J. H., Curran C. A profile of outcome: 2 years after traumatic brain injury. Brain Injury. 1995;9(1):1–10. doi: 10.3109/02699059509004565.
    1. Prigatano G. P. Personality disturbances associated with traumatic brain injury. Journal of Consulting and Clinical Psychology. 1992;60(3):360–368. doi: 10.1037/0022-006x.60.3.360.
    1. Hoofien D., Gilboa A., Vakil E., Donovick P. J. Traumatic brain injury (TBI) 10-20 years later: a comprehensive outcome study of psychiatric symptomatology, cognitive abilities and psychosocial functioning. Brain Injury. 2001;15(3):189–209. doi: 10.1080/026990501300005659.
    1. Ware J. E., Kosinski M., Bjorner J. B., Turner-Bowker D. M., Gandek B., Maruish M. E. SF-36v2Ⓡ Health Survey: A Primer for Healthcare Providers. Lincoln, RI, USA: QualityMetric Incorporated; 2008.
    1. Williamson M. L. C., Elliott T. R., Berry J. W., Underhill A. T., Stavrinos D., Fine P. R. Predictors of health-related quality-of-life following traumatic brain injury. Brain Injury. 2013;27(9):992–999. doi: 10.3109/02699052.2013.801512.
    1. Masel B. E., DeWitt D. S. Traumatic brain injury: a disease process, not an event. Journal of Neurotrauma. 2010;27(8):1529–1540. doi: 10.1089/neu.2010.1358.
    1. Nestvold K., Stavem K. Determinants of health-related quality of life 22 years after hospitalization for traumatic brain injury. Brain Injury. 2009;23(1):15–21. doi: 10.1080/02699050802530540.

Source: PubMed

3
Subscribe