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.
Self-Management Theory
Disease self-management originated in social cognitive theory, which addresses the cognitive, emotional, and behavioral aspects of behavior change and is relevant to managing chronic illness.5,6 Self-management of chronic illness is defined as the daily actions that people take to keep their illness under control, to minimize its impact on physical health status and functioning, and to cope with psychosocial sequelae.7 These actions include making informed decisions about care, performing activities intended to manage the condition, and applying the necessary skills to maintain adequate psychosocial functioning.7
Related to self-management is self-efficacy, people’s confidence in their ability to engage in these actions.7 Evidence-based self-management and self-efficacy strategies are recognized as central in managing a variety of chronic diseases by improving the medical, emotional, and social role that management demands of chronic conditions.8
Self-management and self-efficacy have been explored in patients with epilepsy for decades, with various approaches being developed, implemented, and tested. Findings of several historical studies discussed in this review indicate that patients with epilepsy and high levels of self-efficacy are more successful in performing self-care tasks.9 This growing body of evidence led to the establishment of the Managing Epilepsy Well network in 2007.10 The Centers for Disease Control and Prevention created the network to expand epilepsy self-management research. Since 2007, more research has been focused on the potential for online and mobile health approaches in supporting epilepsy self-management and on intervention studies evaluating e-tools.
Elements of Epilepsy Self-Management
The first element of an epilepsy-specific self-management program is formal education on the diagnosis, treatment, and psychosocial impact of epilepsy and on strategies for coping with it. This element usually includes tools for evaluating and understanding epilepsy, with the goal of empowering patients to become actively engaged in managing and coping with their epilepsy diagnosis. Medication adherence is key in the optimal management of epilepsy. This point is evident in the development of a validated metric for self-efficacy: the Epilepsy Self-Efficacy Scale (ESES).11 Of the 33 items on the ESES, 14 are devoted to aspects of medication management. Other crucial behavioral elements for epilepsy self-management relate to lifestyle issues, such as safety, diet, exercise, sleep, and stress management.
Various self-management programs have incorporated tracking systems for these lifestyle elements as well as epilepsy-specific measures, such as seizure frequency, duration, and type. In addition, social support is an important factor in chronic illness self-management. Results of several studies support the hypothesis that higher levels of social support, particularly disease- and regimen-specific support, are related to better self-management behaviors.12 An increasing number of formal epilepsy self-management programs include peer support platforms and peer navigator features in their suite of services.
Patient Education and Self-Management Programs
Over the past several decades, multiple research groups have developed, implemented, and tested formal self-management platforms for patients with epilepsy. Designs and results of prominent studies are summarized in the Table.
