Introduction from Dr Markus Reuber, editor-in-chief of Seizure
Over the last three decades many neurologists will have gained first hand experience of how the treatment of a neurological emergency can change completely: the management of suspected stroke has metamorphosed from tucking people up in bed with an aspirin to an
Unhelpful and factually erroneous ideas about epilepsy are common around the world and not exclusively a problem encountered in Lower and Middle Income Countries (LaMICs). Stigma continues to affect the opportunities and life chances of individuals with epilepsy in all countries, and superstitions about epilepsy survive even in High Income Countries (HICs) where the persistence of such inaccurate and negative beliefs cannot readily be blamed on lack of access to educational opportunities (1, 2).
In 2015 the World Health Assembly (WHA) recognized this continuing global problem when it adopted a resolution on epilepsy, WHA68.20, which urges coordination of action at country level to address the health, social and public knowledge implications of this disease. This resolution should be a powerful tool, directing countries to implement improvements to medical and social services for people living with epilepsy, and to promote public awareness about epilepsy. A Global Information Kit on Epilepsy has been developed to support the implementation of WHA68.20 recommendations showing how myths like “epilepsy is contagious”, “epilepsy is a punishment or caused by spirit possession”, “people with epilepsy should not work” or “people with epilepsy should not get married” can be tackled (3).
While such documents are important to shape global awareness, policy and funding priorities, the implementation of any programme will have to take account of local social and cultural factors as well as medical and educational resources. To this end I am pleased to select a randomized controlled trial by Unyime Eshiet, Matthew Okonta and Chinwe Ukwe as my Editor’s Choice from the current volume of Seizure (4). They adapted the MOSES educational progamme for people with epilepsy, originally developed in Germany (5), for their local Nigerian context and used pharmacists as a locally available resource to deliver the intervention. In their intervention group they tied one-to-one educational sessions with a pharmacist to regular appointments with the medical epilepsy care provider. They were able to show that knowledge of epilepsy increased over six months in the intervention group and that, at the end of the intervention, those who had received the additional education from the pharmacist had more accurate perceptions of epilepsy.
Given that those living with epilepsy are likely to be most affected by poorly informed ideas about the disease, it makes sense that they were the primary target of the intervention. More work will be required to develop similar programmes at even lower cost, for other sociocultural settings and other target groups, including teachers, employers, political and religious leaders and, indeed, the population in general.
(1) Jacoby A, Snape D, Baker,G. Epilepsy and social identity: the stigma of a chronic disorder. Lancet Neurology. 2005;4,171-78.
(2) Prus N, Grant AC. Patient beliefs about epilepsy and brain surgery in a multicultural urban population. Epilepsy Behav. 2010;17(1):46–49.
(4) Eshiet U, Okonta M, Ukwe C. The Efficacy of a Pharmacist-Implemented Educational Treatment Programme for People with Epilepsy: A Report of a Randomised Controlled Trial. Seizure 2019; 69, 147-153.
(5) Ried S, Specht U, Thorbecke R, Goecke K, and Wohlfa R. (2001). MOSES: An Educational Program for Patients with Epilepsy and Their Relatives. Epilepsia, 42(Suppl. 3):76–80, 2001. Blackwell Science, Inc.