Quality of life in patients with traumatic brain injury-basic issues, assessment and recommendations

Issue title: Quality of life after multiple trauma

Article type: Research Article

Authors: Bullinger, M. | the TBI Consensus Group,

Affiliations: Department of Medical Psychology, University of Hambury, Germany

Note: [] Address for correspondence: Prof. Dr. Monika Bullinger, Department for Medical Psychology, University of Hamburg, Martinistr. 52, 20246 Hamburg, Germany. Tel.: +49 40 42803 2977; Fax: +49 40 42803 4940

Note: [] Members of the Consensus Group: P. Azouvi (Garches, France), N. Brooks (Crownhill Milton Keynes Bucks, Great Btitain) Chairman, M. Bullinger (Hamburg, Germany) Chairwoman, A. Basso (Buenos Aires, Argentina), A.-L. Christensen (Gentofte, Denmark), W. Gobiet (Hessisch-Oldendorf, Germany), R. Greenwood (St. Lobanos Hearts, Great Britain), B. Hütter (Aachen, Gerrmany), B. Jennett (Glasgow, Great Britain), A. Maas (Rotterdam, The Netherlands), J.L. Truelle (Suresnes Cedex, France), K.R.H. von Wild (Münster, Germany)

Abstract: Introduction: Traumatic brain injuries (TBI) are one of the most common consequences of traffic accidents. Patients with mild, moderate or severe brain injuries suffer from physical, cognitive, behavioral, emotional and social problems. Most of these problems have been a long standing focus amongst practitioners and researchers. Only recently a development has started that took interest in the quality of life outcome of TBI patients. The international members of this consensus meeting reviewed the literature on Quality of Life assessment after TBI and discussed the applicability of different measurements to this specific patient group. Time Points: During the acute phase (T1; < 3 month after trauma) QoL it is difficult to assess due to the reduced conciousness of TBI patients. In the phase of rehabilitation (T2; < one year after trauma) and in the post-rehabilitation phase (T3) repeated assessment of QoL is recommended. Instruments: Several generic and disease-specific instruments possibly relevant to TBI patients or specifically developed for this group were assessed according to the existing evidence in the literature. Criteria for the evaluation of these intruments were: feasibility, specificity, validity, comprehensiveness, international availability, existence of norms, and psychometric quality. The cognitive impairment and the existential dimension were not sufficiently considered in most of the reviewed instruments. Group Consensus: The familiy's and relatives' view of the patient's QoL should not be used as a proxy but provides an additional source of information in the acute phase. At T2 and T3, assessment of the patient's quality of life should include a generic as well as a disease specific instrument. Among the generic instruments the SF-36, the EuroQol and the WHO-QoL should be considered. The literature about specific instruments for patients with TBI like the EBIC is scarce. Therefore, the group could hardly give an empiracally based recommendation. The need for further investigation on QoL instruments in TBI patients is strongly emphasized.

Keywords: traumatic brain injury, quality of life, consensus conference

Journal: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 111-124, 2002