A comprehensive community epilepsy programme: the Nakuru project

The methodology of a programme of investigation of epilepsy carried out at a community health level in Nakuru district, Kenya, East Africa, and the characteristics of patients with tonic-clonic epilepsy in this community, are presented. The study identified a group of 302 patients with untreated generalised tonic-clonic seizures (with or without other seizure types) from the general population. Case finding was carried out using the key informant method over a 12-month period. The clinical characteristics of this cohort of patients, the majority of whom had never had previous contact with a formal medical system, is described. Most were young, living in a rural area, with a mean age of seizure onset of 14 years and a mean duration of seizures of 7 years. Thirty-eight per cent had a clinically evident focal disturbance associated with the tonic-clonic seizures. In 77% of the cases, no aetiology was established. Most cases had had a substantial number of seizures during the course of their condition and only about a third of the patients had less than 1 seizure a month in the previous year. Only 26% had ever had previous anti-epileptic drug treatment. In addition to the medical inquiry, psychological and sociological studies were also conducted and a prospective treatment programme was carried out. Throughout the study, strict definitions and standardised instruments were used, and the study was the result of a collaboration between local investigators, an international neurological team, the Kenyan Government agencies and the pharmaceutical industry. We consider this a model for community-based investigations for the management of epilepsy in developing countries.