Epilepsy remains a huge burden. In 2000, the annual total cost of epilepsy treatment in the US was $362 million for new patients and $2 billion for existing cases.25 Within the VHA, the occurrence of posttraumatic epilepsy among the increasing number of veterans with TBI contributes to the burden, and posttraumatic epilepsy and psychogenic nonepileptic seizures complicate treatment approaches. The incidence of comorbidities, including anxiety and depression, has been as high as 50%.23 Epilepsy health care programs are evaluating ways to validate their ability to minimize cost, improve access, and maintain quality of service. Integration of self-management should be included in these efforts.
The VHA represents a unique health care environment for testing and implementing self-management programs. Although the VHA is not immune to the traditional business models of medicine, it is less dependent on them, and it disproportionately cares for patients for long spans of time. From the health care team perspective, data indicate that ECoE physicians represent a high percentage of VHA epilepsy specialists but directly see only about 20% of veterans with an epilepsy or seizure-associated diagnosis. Therefore, future collaboration and connectivity of consortium sites can have a broader impact on self-management—highlighting the fact that concerted, scaled self-management programs have an important role in the VHA health care delivery system and should be promoted.26
Final Insights and Opportunities
Despite the barriers to adoption, formal epilepsy self-management programs are making gains in maturity and academic credibility. As the health care economy gradually shifts to more outcomes-based models, these offerings likely will become more valued, particularly by health care organizations focused on cost sharing, by large self-insuring employers, or organizations like the VHA where patients maintain a long-term relationship. Nevertheless, for the more resource-intensive, in-person self-management programs, adoption may remain constrained. Digital and mobile platforms should serve as more accessible entry points, with lower costs and more rapid scaling potential. Even though these online platforms may not have the same impact as intensive face-to-face programs, their scalability and constant accessibility should make them attractive, and the relatively modest cost of implementing self-guided programs should reduce barriers to adoption.
Integrated health care systems, such as the VHA and various European health systems, can serve as models for self-management implementation. Incorporating a live clinical implementation into parallel research efforts can continue to produce vital academic information on the real-world impact of these solutions, and this evidence in turn can be used to support policies that foster widespread adoption. More specifically, the ECoE model represents a clear opportunity to promote widespread implementation of self-management. The ECoEs are already publishing self-management materials that health care teams can use in patient counseling,and several self-care studies are being conducted within the network.22 In this model, compared with private sector health systems, ECoEs are well positioned to advance the use of formal self-management strategies.
The proposed epilepsy self-management model for ECoEs would be based on an iterative program that incorporates best practices from each of the research studies discussed earlier. With the publication of new research, successful self-management tools would be incorporated into the programs. From a curriculum perspective, educational platforms on medication adherence, seizure safety, and information/data management should be included. Evidence is increasing that peer support and use of licensed peer navigators should be incorporated as well. Last, flexible and asynchronous digital methods should be added to self-management platforms to maximize patient access. These features build on the growing body of evidence to maximize the likelihood of a successful and sustainable self-management strategy for patients with epilepsy.