Subjective experience in brain injured patients and their close relatives: A European Brain Injury Questionnaire study

Abstract

Results are reported from an international project the aim of which has been to develop and validate a wide-ranging questionnaire suitable for administration to brain-injured patients and their relatives. A self-report questionnaire concerning subjective experience of cognitive, emotional and social difficulties (The European Brain Injury Questionnaire, EBIQ) was administered to a group of 905 brain-injured patients, and close relatives to these competed a parallel version of the questionnaire concerning the brain-injured person. The sample was drawn from seven European countries together with Brazil. The same questionnaire 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 questionnaire showed consistently greater levels of problems for the brain-injured group, especially as indicated by relatives. This pattern was substantially replicated among the nine scales. The scales discriminated well between stroke patients and those who had suffered a traumatic brain injury. There was also a tendency for reported problems to be greater for patients who were surveyed later post-injury (> or = 19 months) rather than earlier. Comparison of sets of controls derived from two countries (France and Brazil) showed small but important differences. It is concluded that the questionnaire has an acceptable reliability and validity, but that it will be necessary to obtain culturally relevant non-brain-injured control data when employing it in different countries.

Factors affecting participation after traumatic brain injury

“…Four years after the injury a letter was sent to each patient at home, asking them to complete 4 questionnaires: EuroQol-5D (EQ-5D), a self-report of health-related quality of life, consisting of 5 domains (mobility, self-care, usual activities, pain/discomfort, and anxiety/ depression) (12), to which is added a visual analogue scale (VAS) for evaluation of perceived health-related quality of life, where 0 = worst imaginable health status and 100 = best imaginable health status; the European Brain Injury Questionnaire (EBIQ), a self-report measure for persons who are brain injured, that measures the subjective experience of cognitive, emotional and social difficulties (13); the Impact on Participation and Autonomy Questionnaire (IPA) (14), a questionnaire with 39 items measuring participation in accordance with the definition set out in the ICF; and a questionnaire from the Swedish Stroke Register (http://www.riks-stroke.org/index.php?content=form) concerning living conditions, activities of daily living and support (modified so that the questions started with "since your brain injury…"). Demographic data and severity of the trauma, according to the Reaction Level Scale (RLS) (15), were gathered from medical charts.…”

Avaliação da experiência subjectiva em pessoas com lesão cerebral: Adaptação para a populagão portuguesa do European Brain Znjury Questionnaire (EBIQ)

“…O estudo original (Teasdale et al, 1997) Nos domínios/escalas cognitivo, motivação, físico e nuclear havia um padrão idêntico mais elevado nos sujeitos com lesão cerebral, comparativamente com os controlos, que atingia ainda níveis mais elevados nas respostas dos familiares dos doentes. Assim, foi sugerido que os doentes poderiam subestimar os seus problemas, apesar de terem algum insight sobre eles.…”

“…O European Brain Injury Questionnaire (EBIQ - Teasdale et al, 1997) foi criado para que, de uma forma simples, o doente possa fazer uma avaliação da sua experiência subjectiva e, simultaneamente, um familiar próximo faça também uma avaliação paralela do doente. O presente trabalho constitui a adaptação do EBIQ para uma população de controlo portuguesa (307 pares -sujeito/ /elemento da família), de modo a permitir a utilização deste instrumento em diversas situações decorrentes de lesão cerebral em sujeitos adultos.…”

Reabilitação neuropsicológica em fase aguda e crônica após Traumatismo Crânio-Encefálico (TCE) grave: relato de caso

“…De acordo com a avaliação inicial, por meio do questionário de alterações decorrentes de lesão cerebral adquirida European Brain Injury Questionnaire (EBIQ) (Teasdale et al, 1997), a percepção do familiar sobre as dificuldades presentes nas atividades diárias indicou maior impacto funcional, quando comparado à percepção do próprio paciente, na maioria das categorias investigadas (Tabela 3), em razão das alterações de comportamento e de autopercepção apresentadas por este. O tratamento incluiu atendimentos individuais, inicialmente, duas vezes por semana; atendimento em grupo semanal e orientação familiar (Tabela 4).…”