More recent programs also included a focus on peer-to-peer support and patient-driven content within the educational curriculum.16,17 In 2015, Hixson and colleagues used an entirely patient-driven online platform.18 Unlike the programs described thus far, this platform made educational modules available and did not require that patients complete them. Peer-to-peer support and self-tracking tools were prominently featured, and patients used them. In addition, this intervention focused exclusively on a group of US veterans with epilepsy.
Tools for Improving Self-Management
Self-management programs for patients with epilepsy historically have involved formalized programs conducted face-to-face with other patients, with professional moderators, and perhaps with caregivers. These programs depended entirely on in-person educational sessions and in-person support groups and were found to be very effective in improving self-management skills, though they were labor-intensive and logistically challenging for both practitioners and patients.
Since the advent of the Internet and mobile connectivity, many programs have incorporated the same elements in more accessible form. Educational content appears in live webinars and asynchronous video educational modules; the latter are attractive because patients and caregivers can access them independently at any time. Also readily available are tools for day-to-day self-management of medical conditions. These tools include mobile and online diaries for tracking seizure metrics and medication adherence reminder systems. Last, a variety of online and mobile disease-specific social networking platforms allow patients to connect directly to others without having to travel long distances to meet in-person. Although these digital solutions may not provide the exact experience offered by an in-person support group, the promise of superior accessibility creates an advantage in terms of accessibility and flexibility.
Self-Management in the Literature
In a recent review of care delivery and self-managementstrategies for adults with epilepsy, Bradley and colleagues analyzed 18 different studies of 16 separate interventions and concluded that 2 interventions, the specialist epilepsy nurse and self-management education, had some evidence of benefit. Four studies, detailed next, had the highest quality design, based on a focus on epilepsy self-management specifically, a prospective hypothesis-driven approach, and rigorous methodology.19
In 1990, Helgeson and colleagues evaluated Sepulveda Epilepsy Education, a 2-day in-person program designed to provide medical education and psychosocial therapy to patients with an epilepsy diagnosis.13 The program was based on the theory that having a better understanding of their epilepsy helps people cope with the condition. Medical, social, and emotional topics are covered. Medical topics include epilepsy and how it may change over time, as well as diagnosis, treatment, and first aid; social and emotional topics include coping with the psychological aspects of epilepsy, family, social aspects, and employment. In this small study (38 patients total), compared with the control group (18 patients), the treatment group (20 patients) demonstrated a significant reduction in the level of fear of death and brain damage caused by seizures, a significant decrease in hazardous medical self-management practices, and a significant decrease in misconceptions about epilepsy. The treatment group also increased their medication adherence, as determined by serum drug levels. In addition, statistically nonsignificant trends were shown by the treatment group toward improved emotional, interpersonal, and vocational functioning; improved adjustment to seizures; and improved overall psychosocial functioning.
In 2002, May and Pfäfflin evaluated the efficacy of the Modular Service Package Epilepsy (MOSES) educational program.14 This program was specifically developed to improve patient knowledge about epilepsy and its consequences and diagnostic and therapeutic measures, and to improve patient understanding of psychosocial and occupational problems. It was the first comprehensive program used in German-speaking countries. It had 9 modules: coping with epilepsy, epidemiology, basic knowledge, diagnostics, therapy, self-control, prognosis, psychosocial aspects, and network. To complete the program, patients work through about fourteen 1-hour lessons. The controlled, randomized study by May and Pfäfflin involved 242 patients (113 treatment, 129 control) aged 16 to 80 years. Patients in the treatment (MOSES) group demonstrated significant improvements in 2 of the 9 modules (knowledge, coping with epilepsy), had improved self-reported seizure outcomes, were more satisfied with therapy, experienced better tolerability of antiepileptic drugs with fewer adverse effects (AEs), and were highly satisfied with the program. The researchers concluded that educational programs, such as MOSES, should become a standard service for specialized epilepsy care.
Developed over many years, WebEase is an online epilepsy self-management program that supports education on medication, stress, and sleep management. In 2011, DiIorio and colleagues reported on a WebEase trial in which 194 patients were randomly assigned to either a treatment group (n = 96) or a wait-list control group (n = 96), and 2 were lost to follow up.11 After accounting for study criteria and study drop out, 70 participants completed the treatment arm, and 78 completed the control arm. The study measured the impact of the platform on multiple outcome metrics, including 3 behavioral areas of focus. At follow-up, self-reported levels of medication adherence were higher for patients in the treatment group than for those in the control group. Analyses also compared patients who completed WebEase modules with those who did not. Patients who completed at least some WebEase modules reported higher levels of self-efficacy, and a trend toward significance was found for medication adherence, perceived stress, self-management, and knowledge. The authors concluded that online tools that support epilepsy self-management could be effective.11
In 2015, Fraser and colleagues reported the results of the Program for Active Consumer Engagement in Self-Management in Epilepsy (PACES in Epilepsy), a consumer-generated self-management program.16 In the trial, 83 adults with chronic epilepsy were initially assigned either to an in-person intervention or to treatment as usual. After study drop outs, 38 patients remained in the intervention arm, with 40 in the control arm. In the intervention, 6 to 8 adults met for a 75-minute group session 1 evening per week for 8 weeks; these sessions were co-led by a psychologist and a trained peer with epilepsy. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, in addition to community integration and optimization of epilepsy-related communication. Outcomes were measured with various instruments, including the ESES, the Quality of Life in Epilepsy-31 (QOLIE-31), the Epilepsy Self-Management Scale (ESMS), the Patient Health Questionnaire-9, and the Generalized Anxiety Disorder-7. Each test was administered at baseline and after intervention. Outcomes were assessed immediately after program completion (8 weeks) and at follow-up 6 months later.
Findings suggested a substantial positive impact on epilepsy self-management capacities at program completion. In addition, benefit was sustained, particularly for epilepsy information management, over the 6 months after program completion. On the QOLIE-31 at 6 months, management of medication AEs also remained significantly improved, and fatigue management was improved at the P < .05 level. The researchers concluded that the PACES in Epilepsy program might have a more sustained impact on management of disability than on mood. They also noted that the effect was greater immediately after program completion than at 6 months. Patients gave the PACES program high satisfaction ratings.
Although these programs take slightly different approaches to epilepsy self-management, they have a similar focus: directed patient education. Furthermore, most of these programs are conducted in person, usually in a support group setting. In the WebEase trial, patients seem to have completed the online modules in a study setting, and a peer support component was not included. Overall, all programs successfully demonstrated various benefits for trial patients. These outcomes suggest that despite their subtle differences in approach, formal self-management programs are benefiting patients.
None of these platforms was designed for or specifically tested veterans with epilepsy. Although veterans theoretically would benefit from the same tools used by nonveterans, Iraq and Afghanistan veterans with epilepsy are more likely than are those without epilepsy to have mental and physical comorbidities and significantly higher mortality.2 Therefore, veterans potentially could benefit more from evidence-based chronic disease self-management programs designed to reduce physical and psychiatric comorbidities. Furthermore, programs that incorporate peer-to-peer support and direct links to VA care teams and mental health providers could be valuable.18
One research effort that directly addressed these issues is the Policy for Optimized Epilepsy Management (POEM) study, conducted by Hixson and colleagues in 2015.18 This study, not included in the review by Bradley and colleagues, used a purely online- and mobile-based social networking platform to promote self-management practices.19 Unlike the other programs described here, POEM did not require that patients view or attend formal educational seminars, though these seminars were available through the online platform for patient self-directed viewing. In addition, the intervention heavily promoted peer-to-peer engagement and disease tracking as means of increasing self-knowledge and activation. This study was unlike the other platforms in another way: It specifically focused on veterans with epilepsy, based on the idea that many veterans had a shared experience that would optimize a peer support approach.
The POEM investigators did not use a controlled design but found a significant benefit for both ESES and ESMS metrics on within-subject comparisons. Similar to the PACES in Epilepsy study, the POEM study found the highest benefit on the information management subscale of the ESMS.16 Practically speaking, this means patients were better able to use and manage digital and mobile information resources for controlling epilepsy. The POEM study results further reinforced the idea that epilepsy self-management programs are beneficial and expanded on earlier research to emphasize the value of peer support networks and digital interventions that can be used by patients at their convenience. These features provide greater access to more patients and maintain the crucial elements of peer-to-peer learning and counseling.