Abstract

Epilepsy, the most common serious neurological condition, is one of the most widespread non-transmissible diseases in the world. In developing countries, about 90% of those with epilepsy do not receive appropriate treatment; this treatment gap, very high compared with other chronic diseases, helps to explain the marginalisation and poor living conditions of these people. Reducing this treatment gap and the burden that epilepsy represents is a difficult task and the obstacles are numerous. The cultural attitudes, the absence of priority for this disease, the weak health infrastructure and the insufficient supply of anti-epileptics are just some of the factors that prevent adequate treatment. The extent of this problem led WHO and the International League against Epilepsy to launch an international campaign in June 1997 to bring epilepsy "out from the shadows". We sought to evaluate a strategy of community-based care for epilepsy in the six pilot districts. This strategy consisted in reducing the treatment gap in six local primary care units (PCUs) and then spreading the programme to surrounding PCUs, the entire district and then the entire region. This prospective evaluation study, which took place from May 2008 to July 2009, applied many strategies. WHO/AFRO made available funding of USD 3500 a year. A training meeting was held for PCU staff and community health agents, and numerous meetings from May 2007 through March 2008 aimed to increase awareness and motivation. The National Program for Mental Health (NPMH) ensured the availability of a permanent supply of anti-epileptics. Monitoring with supervision of activities and evaluation were conducted during and at the end of the process by the members of the Lomé Hospital neurology team and the management team of every district. Community-based management of 816 people with epilepsy over a period of 15 months was assessed internally. The planned strategies were conducted. The sex ratio (M/W) was 1.10. Treatment adhesion ranged from 96% to 99%. Mortality was 9%. The treatment gap in the PCUs, which varied from 98% to 94% in May 2008 fell by July 2009, ranging from only 40% to 25%. The "good practice" of accepting and treating patients with epilepsy in these areas where traditional culture excludes them from the community demanded the local acceptance of responsibility -- both medical and psychosocial. The reduction in epilepsy attacks and the integration of 2 or 3 patients in a community sufficed to bring other people with epilepsy out from the shadows. These successes show that in developing countries, it is possible to improve the health of different populations when these projects are integrated into primary health care. Positive results, and specifically a treatment gap below 50%, were obtained in all six PCUs. These results, acquired after months of activity, contributed to decrease the stigmatisation of epilepsy. Maintaining this reduction in the treatment gap requires continuation of the struggle against epilepsy and permanent improvement of primary health care. The often unplanned moves of staff and the reluctance of district and regional health managers to allocate resources to the project to perpetuate the programme constitute major difficulties. It appears urgent to adopt an active policy for providing care of patients with epilepsy in Africa in order to increase their lifespan.

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