Programs for people with epilepsy—exploring innovative control options

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Epilepsy is one of the most frequent neurological disorders, with about 50 million people living with epilepsy (PWE). Most of them live in resource-poor countries, with only about one of five patients having access to adequate treatment options. Resources to increase access to treatment are scarce. Therefore, it is crucial to explore their efficient use and the various options to facilitate and improve community effectiveness of case ascertainment and management.

In this issue of Epilepsia, Kendall-Taylor and colleagues report on their experience with traditional healers and epilepsy in Kenya, and Kengne and colleagues report on results of nurse-led care of epilepsy patients in rural health services in Cameroon. Both teams elaborate on how these key persons may enhance the effectiveness of community epilepsy management, and how they may increase access to treatment.

In Kenya, traditional healers identify patients with active epilepsy, using the local term “kifafa” to designate it. The healers associate the causes of epilepsy with repeated visits of “hungry” spirits of ancestors, consistent with part of the local belief systems; traditional treatment addresses this critical issue. Importantly, the healers take into consideration the patients' sociological environment. The healers are flexible with respect to the payment of services, and this flexibility is cited as a further reason for the healers' popularity and patients' high compliance. The authors of this study underline the importance of including traditional healers in a community approach to improve access to Western medicine treatments, a view motivated in part by the healers' willingness to share their views and practices in “kifafa” treatment. In our experience, this level of cooperation is not always the case. The established activities and involvement of Kendall-Taylor et al. (2008) in this region of Kenya may explain their particularly positive collaboration with the traditional healers. In fact, the authors also report that certain healers were suspicious of Western practitioners. Therefore, the collaboration between Western and traditional medicine—although seen from both sides as potentially beneficial—still faces substantial challenges.

Kengne and colleagues (2008) report a nurse-led (prospective, nonrandomized) intervention study in Cameroon, conducted between 1998 and 2000. Nurses were trained to use diagnosis and treatment protocols for epilepsy. The program started with 66 PWE identified through a survey. Over the 2-year period of the study, the program attracted more than twice as many new patients, suggesting that the program answered an existing public health need in the area. The consistent downward trend in number of days of seizures per month of enrolled PWE indicates the medical success of the program. A randomized intervention study is still necessary to definitely show the efficacy of nurse-led intervention, but the current study highlights the potential of this approach.

More options for intervention exist and/or are required, depending on local circumstances. Hence, small-scale interventions such as reported by Kengne and colleagues, and investigations of all public health stakeholders, such as traditional healers in the Kenyan study, enrich and optimize implementation options of national control programs. Another example is a 2-year small-scale intervention in Lao Peoples' Democratic Republic, where phenobarbital was made available at a district hospital. This study resulted in an important lesson: Low compliance and high mortality of PWE were observed, indicating that the local conditions in relation to traditional beliefs and stigma must be understood better in order to set up large-scale control interventions (Tran et al., 2008).

With respect to the dissemination of treatment interventions in resource-poor parts of the world, epilepsy has some advantageous characteristics, including easy recognition of the more severe clinical forms (generalized seizures) and efficacious and inexpensive drugs. The widespread stigma associated with the disorder, and the often weak health care delivery system in resource-poor settings, pose challenges to seizure control efforts. Clearly, local adaptations and solutions are required to optimize national programs.

Acknowledgments

Conflict of interest: The authors have read the Journal's position on issues involved in ethical publication and affirm that this commentary is consistent with those guidelines. None of the authors have any conflicts of interest to disclose.

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