Original Research

Self-Management in Epilepsy Care: Untapped Opportunities

Constant accessibility, rapid scalability, and modest costs make digital and mobile epilepsy self-management platforms an attractive alternative to resource-intensive in-person programs.

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Epilepsy is a chronic neurologic condition defined by recurrent seizures not provoked by an environmental or a reversible trigger. About 1% of the US population has an epilepsy diagnosis, and an even higher percentage of the world’s population has seizures. 1 For the many US soldiers who sustain blast-and concussion-related injuries, posttraumatic epilepsy is a potential risk. 2 Although the risk of epilepsy remains unknown, the Veterans Health Administration (VHA) prioritizes diagnosis and management of the condition. Fortunately, antiepileptic therapies are effective for most patients. About 65% of patients can be free of seizures with use of a single daily medication. 3 Although the other 35% often experience refractory seizures, advanced medication regimens, surgical approaches, and innovative devices can effect improvement in some cases.

Increasingly, patients are urged to practice epilepsy self-management. The idea of self-managing epilepsy, which has existed for decades, is supported primarily by a theory of robust patient education intended to increase disease knowledge and improve decision making. Multiple formal self-management programs have been developed and academically tested for patients with epilepsy. In a 2013 report, the Institute of Medicine emphasized the importance of research on the effects of behavioral self-management interventions on health outcomes and quality of life for people with epilepsy. The report recommended improving and expanding educational opportunities for patients. 4 Nevertheless, self-management programs have not found widespread traction in mainstream clinical use.

This article provides a review of chronic disease self-management with a focus on its application and study in epilepsy. The authors discuss self-management, including underlying theory, definitions, and various tools. The principal formal epilepsy programs that have been studied and published are highlighted and summarized. This review also includes a discussion of the potential barriers to successful implementation of these epilepsy programs along with emerging solutions and tools for addressing these barriers.

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