Epilepsy affects about 50 million people worldwide. In the Veterans Health Administration (VHA), an estimated 79,576 Veterans were treated for epilepsy in 2016. Seizure control and medication adherence are common challenges among patients; decreased health care literacy, poor social support, burdensome side effects, low socioeconomic status, and co-occurring psychiatric disorders are all associated with lower medication adherence. Patient self-management behaviors are important to the management of epilepsy, as decreased patient participation in treatment regimens is a major cause of breakthrough seizures, leading to increased hospital utilization and mortality.
In 2003, the Institute of Medicine defined self-management support as “the systematic provision of education and supportive interventions by health care staff to increase patients’ skills and confidence in managing their health problems, including regular assessment of progress and problems, goal setting, and problem-solving support.” In Veterans Affairs (VA), self-management has an established role in the management of chronic conditions, such as diabetes mellitus, chronic obstructive pulmonary disease, and depressive disorders.
For patients with epilepsy, improved self-management skills could improve self-efficacy, medication adherence, avoidance of seizure triggers, and improve patient and family knowledge about when to seek urgent medical care. A Cochrane review that included literature published through December 2013 evaluated self-management strategies for adults with epilepsy. The review identified only 4 trials and concluded that self-management education has some evidence of benefit but did not find clear evidence of substantially improved outcomes for adults with epilepsy. Prior systematic reviews on this topic were inadequate for the needs of our stakeholders because they do not include recent important studies and did not adequately consider components such as peer support, which has particular relevance to Veterans. This review will address these gaps in evidence, synthesize the current evidence on self-management programs for patients with epilepsy, and identify potential barriers in the adoption of these programs within the VHA system.