Background. Patients with refractory epilepsy often have impaired quality of life (QOL) as a consequence of seizures and adverse effects of antiepileptic drugs. We assessed the impact of adverse effects on QOL and the utility of a structured instrument to help the physician manage adverse effects in patients with refractory epilepsy. Methods. Clinical characteristics, drug treatment and adverse effects were evaluated in 102 patients with refractory epilepsy at a single tertiary referral centre. The Adverse Events Profile (AEP) and Quality of Life in Epilepsy-31 (QOLIE-31) questionnaires were completed at baseline and after six months. At baseline, patients with a high burden of adverse effects (AEP scores ≥45) were randomized to an intervention or control group. AEP scores in the intervention group were available to the physician as an instrument to help to reduce adverse effects. Results. Ninety-five patients (93.1%) were on polytherapy. Sixty-six completed the questionnaires and, of these, 43 (65.1%) had a high AE burden and were randomized to the intervention and control group. QOLIE-31 scores were inversely correlated with AEP scores at both visits. Among randomized patients, AEP scores tended to decrease between the baseline and the final visit without significant differences between groups (intervention group: 54.1 ± 6.1 vs 51.1 ± 9.1; control group: 55.8 ± 5.8 vs 50.5 ± 12.2). QOLIE-31 scores did not change substantially between visits (intervention group: 45.9 ± 17.4 vs 48.4 ± 14; control group: 47.5 ± 15.7 vs 45.2 ± 18.9). Conclusion. A significant proportion of patients had a high toxicity burden which had an impact on their QOL. Reduction of overtreatment is a difficult challenge which cannot be addressed solely by providing a structured assessment of adverse effects, but requires a more comprehensive approach aimed at optimizing the many components of the management strategy.

Epilepsy, a chronic disorder affecting 1% to 2% of the world population, is mainly characterized by the recurrence of epileptic seizures 1 . It has been observed, on few last decades, an increased concern from health care professionals towards other aspects related to the quality of life from patients with epilepsy that are not only the control of seizures recurrence 2,3,4,5 . Publications suggest that patients might be treated in a broader approach, giving importance to psychosocial ABSTRACTObjective: Characterize the social profile and the need of information from patients with refractory epilepsy. Method: A semi-structured questionnaire was applied to 103 patients to investigate sociodemographic aspects, pharmacotherapy and any doubts about epilepsy. Results: Patients were highly dependent on having a free and accessible supply of antiepileptic drugs. Sixty-eight percent of the population was unemployed, and 26% confirmed receiving social security benefits due to epilepsy. Twenty-nine percent of the population reached high school. Eighty-five percent of the patients had at least one doubt about epilepsy; treatment and epilepsy aspects in general were the main topics. Conclusion: As observed in developed countries, patients with refractory epilepsy from a developing country also have high rates of unemployment and low educational levels. The results raise a concern about the need of information about epilepsy by patients and their families, urging the necessity to invest in strategies to solve this deficiency in knowledge.Keywords: epilepsy, social evaluation, information, outpatient service. RESUMOObjetivo: Caracterizar o perfil social e a necessidade de informações por parte de pacientes com epilepsia refratária. Método: Um questionário semi-estruturado foi aplicado a 103 pacientes para investigar aspectos sociodemográficos, farmacoterapia e quaisquer dúvidas sobre epilepsia. Resultados: Os pacientes mostraram-se altamente dependentes de um fornecimento gratuito e acessível de drogas antiepilépticas. Sessenta e oito por cento da população estava desempregada, e 26% confirmaram receber algum benefício social devido à epilepsia. Vinte e nove por cento da população alcançou ensino médio. Oitenta e cinco por cento dos pacientes tinha ao menos uma dúvida sobre epilepsia; tratamento e aspectos gerais da epilepsia foram os principais temas. Conclusão: Tal qual observado em países desenvolvidos, pacientes com epilepsia refratária em países em desenvolvimento também apresentam altas taxas de desemprego e baixos níveis educacionais. Os resultados são preocupantes no que diz respeito à necessidade de informações sobre epilepsia por parte dos pacientes e seus familiares, apontando a necessidade de se investir em estratégias que solucionem esta deficiência de conhecimento.Palavras-chave: epilepsia, avaliação social, informação, serviço ambulatorial.