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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