Assessment of health-related quality of life in persons after traumatic brain injury - development of the Qolibri, a specific measure

Background Health-related quality of life (HRQOL) associated or not with the measurement of neuropsychological functioning is a relatively new outcome variable in the field of traumatic brain injury (TBI). In both cases, accuracy and precision are increased in outcome estimation. Validation of generic, cross-culturally (cc) administered HRQOL measures in persons after TBI is not yet well established. Disease-specific HRQOL instruments do not exist in an international context. The objective here is to present the TBI consensus group's (QOLIBRI-Group) approach in cc development of a specific HRQOL measure - the QOLIBRI (Quality of Life after Brain Injury). Methods. Special issues of TBI-specific instrument creation will be highlighted as well as cc questionnaire construction, development, translation and psychometric testing. Results. The validation process of the preliminary version of the disease-specific QOLIBRI in 15 countries and 13 languages will be described. The QOLIBRI assesses HRQOL within six domains (physical condition, thinking activities, feelings and emotions, functioning in daily life, relationships and social/leisure activities, current situation and future prospects). The QOLIBRI integrates disease-specific issues of TBI patients, i.e. cognition, existential aspects (as the sense of self) etc., which are missing in generic tools. Conclusion. In TBI patients, generic and disease-specific aspects of HRQOL need to be assessed with measures of adequate psychometric quality, applicable across different populations and cultural conditions. The QOLIBRI is a promising instrument for sensitive patient-centered specific outcome evaluation after TBI.