Abstracts

RATIONALE: The importance of people[scquote]s knowledge about their epilepsy was highlighted by the Commission for the control of Epilepsy and its consequences who stated [dsquote]the understanding that an individual has about any disability is related to the success the individual has in coping with the disability.[dsquote] It has been suggested therefore that the provision of appropriate information about individuals[scquote] condition may help reduce the emotional impact of both the impacts of seizures and their treatment and the psychosocial consequences. The aims of the study are twofold; to describe levels of knowledge about epilepsy among the carers of people with epilepsy in Europe and to determine the relative contribution of clinical, demographic and psychosocial variables.
METHODS: To date our study has been conducted in nine European countries. The sampling frame for the study was the epilepsy support groups. Two self-completion questionnaires, one for people with epilepsy (PWEs), one for carers were developed in English and then translated. The questionnaires contained a number of measures including the following; knowledge of epilepsy, impact of epilepsy, acceptance of illness, and stigma. In addition information about respondents clinical and demographic circumstances was collected.
RESULTS: The study was conducted in 9 countries in Europe, with 4829 people with epilepsy and 5185 carers. Almost half of the respondents reported that they had difficulty in accepting their illness and 17% felt highly stigmatised by it.There were significant variations in scores on the Knowledge of epilepsy scale. A shorter duration of epilepsy, less stigma, higher (better) scores on the Acceptance of Illness Scale, and country of origin were significant predictors of high scores on the Epilepsy Knowledge Questionnaire. There were also between country differences,e.g with respondents from France reporting lower scores on the Acceptance of Illness Scale (AIS), impact of epilepsy scale and the stigma of epilepsy scale.
CONCLUSIONS: This study provides some evidence to support the need to improve people[scquote]s understanding and knowledge of epilepsy. A number of factors including the duration of epilepsy, level of education and cultural impact were important in explaining the variation in scores and these should be considered important when addressing the issue of knowledge as apart of the overall management of epilepsy.
Support: Sanofi-Synthelabo
Disclosure: Grant - Educational Grant from Sanofi-Synthelabo. Ownership - Intellectual rights owned by the first and second authors. Honoraria - Yes.