SELF-MANAGEMENT IN EPILEPSY CARE: BACKGROUND, BARRIERS, AND SOLUTIONS

Abstract

Self-management programmes for epilepsy have been developed and studied for several decades but have proven difficult to implement and sustain in clinical practice settings. The most advanced work on the concept of self-management has occurred in academic centres with a focus on the theoretical underpinnings of patient and caregiver learning and social support, and the validation of outcome metrics. Although limited by trial design and real-world implementation, many programmes for epilepsy self-management have been successfully demonstrated to provide some benefits. Very few of these programmes however have been successfully sustained and scaled beyond the academic world. Known barriers include logistics and staff resource limitation, patient/caregiver travel, lack of an incentive structure, and limited healthcare promotion. New digital methods of presenting self-management educational content and services may address many of these barriers, even if the experience is less controlled. These online and mobile services permit ‘on-demand’ availability of content that can be tailored to individual needs. However, the epilepsy community must continue to actively promote and sponsor the concept of self-management as a whole.

Keywords

• epilepsy
• self-management
• self-efficacy
• patient engagement
• digital health
• remote monitoring
• patient education