Demonstration project on epilepsy in Brazil: outcome assessment.

Purpose: To assess the outcome of patients with epilepsy treated at primary care health units under the framework of the demonstration project on epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign Against Epilepsy.

Method: We assessed the outcome of patients treated at four primary health units. The staff of the health units underwent information training in epilepsy. The outcome assessment was based on: 1) reduction of seizure frequency, 2) subjective perception from the patients and the physicians point of view, 3) reduction of absenteeism, 4) social integration (school and work), and 5) sense of independence.

Results: A total of 181 patients (93 women - 51%) with a mean age of 38 (range from 2 to 86) years were studied. The mean follow-up was 26 months (range from 1 to 38 months, 11 patients had follow-up of less than 12 months). Seizure frequency was assessed based on a score system, ranging from 0 (no seizure in the previous 24 months) to 7 (>10 seizure/day). The baseline median seizure-frequency score was 3 (one to three seizures per month). At the end of the study the median seizure-frequency score was 1 (one to three seizures per year). The patients and relatives opinions were that in the majority (59%) the health status had improved a lot, some (19%) had improved a little, 20% experienced no change and in 2% the health status was worse. With regard to absenteeism, social integration and sense of independence, there were some modest improvements only.

Discussion: The development of a model of epilepsy treatment at primary health level based on the existing health system, with strategic measures centred on the health care providers and the community, has proved to be effective providing important reductions in seizure frequency, as well as in general well being. This model can be applied nationwide, as the key elements already exist provided that strategic measures are put forward in accordance with local health providers and managers.