Abstracts

Quality of life in epilepsy (QOLIE) is a term that, according to some authors, aims to define certain features of human experience, in which the main factor is a subjective feeling of well-being. Most questionnaires on QOLIE in children are applied to parents, leading to an indirect measure of the effects of a disease that is in fact lived and experienced by the child in question. This study (1) evaluates QOLIE in children and adolescents with epilepsy using an auto-applicable questionnaire that enables an estimation of the child[rsquo]s own perception of his/her disease and (2) compares the child[rsquo]s with the parent[rsquo]s awareness. We applied the [italic]Children[rsquo]s Global Assessment Scale[/italic] (CGAS) and [italic]Vineland Adaptive Behavior Scale [/italic](VINELAND), with communicational, daily activity and sociability subscores, as well as total score (TOTAL VIN) to parents. [italic]Autoquestionnaire qualite de vie enfant image[/italic] (AUQEI), validated for the Brazilian population by Assumpcao Jr. et al.(2000), was applied on 28 children with epilepsy, aged from 4 years to12 years and 11 months, and compared to 28 paired healthy, age-matched school children (controls). Independent t test was used, with a significance level of 5%. No significant differences as to CGAS results were observed between both groups. In children with epilepsy TOTAL VIN, and all of its subscales, showed significantly worse results than in controls. Likewise, as to total scores of AUQEI, children with epilepsy had significantly lower scores than controls. In our study, children with epilepsy presented lower scores than controls as to their perception in QOLIE and in adaptative behavior. However, as observed by CGAS results, parents were unaware of a worsened state. Therefore, development of research instruments capable of pointing out the patient[acute]s own perception of his/her condition and treatment are crucial.