SUBJECTIVE EXPERIENCE IN BRAIN-INJURED PATIENTS AND THEIR CLOSE RELATIVES - A EUROPEAN BRAIN INJURY QUESTIONNAIRE STUDY

Results are reported from an international project the aim of which ha s been to develop and validate a wide-ranging questionnaire suitable f or administration to brain-injured patients and their relatives. A sel f-report questionnaire concerning subjective experience of cognitive, emotional and social difficulties (The European Brain Injury Questionn aire, EBIQ) was administered to a group of 905 brain injured patients, and close relatives to these competed a parallel version of the quest ionnaire concerning the brain-injured person. The sample was drawn fro m seven European countries together with Brazil. The same questionnair e was also administered to a group of 203 non-brain-injured controls, similarly in self-report and relative-report versions. Scales relating to eight specific areas of functioning, together with a global scale, are derived from the questionnaire and their internal reliability was estimated in the present data. Analyses of the 63 items of the questi onnaire showed consistently greater levels of problems for the brain-i njured group, especially as indicated by relatives. This pattern was s ubstantially replicated among the nine scales. The scales discriminate d well between stroke patients and those who had suffered a traumatic brain injury. There was also a tendency for reported problems to be gr eater for patients who were surveyed later post-injury (greater than o r equal to 19 months) rather than earlier. Comparison of sets of contr ols derived from two countries (France and Brazil) showed small but im portant differences. It is concluded that the questionnaire has an acc eptable reliability and validity, but that it will be necessary to obt ain culturally relevant non-brain-injured control data when employing it in different countries.