Self-Management in Epilepsy Care: Untapped Opportunities
Implementation Barriers
Confirming the effectiveness of self-management programs is only the beginning of formal implementation and adoption. The real-world success of patient self-management programs has been documented for a few chronic diseases, including epilepsy. However, there is little research or commentary on lessons learned or on the challenges encountered with wide implementation of these programs.
Initial Setup and Sponsorship
To promote wider adoption, researchers should include commentary on initial setup, ongoing patient acceptance, and continual provider support. Many of the initial challenges in self-management programs involve a changing paradigm in the delivery and economics of health care. The transition to a more consumer-oriented health model with an emphasis on outcomes and patient-reported variables likely will support self-management strategies but is only slowly evolving. Many health care providers, hospitals, and payers may not be familiar with or have proper incentivizes to explore self-management tools even when proven effective.
More specifically, these epilepsy self-management programs are treatment adjuncts well suited to military and veteran health care systems. Self-management closely aligns with the overall VHA mission, vision, and values, including formal Department of Veteran Affairs (VA) goals and the MyVA priorities that collectively embrace improvement in access, a veteran-centric approach, and quality for improvement of the entire VA experience. Self-management platforms in the VA are recognized as empowering veterans and are thought to indirectly improve access to health care.20,21
The barriers of sponsorship and financial support likely will persist in the private health care sector but are less likely to significantly affect the VHA. Self-management programs have been researched and implemented for many health conditions across the VHA. For example, the VA Talent Management System course Patient Self-Management: Skill Building (TMS 6467) offers education and training to all clinical practitioners and managers involved in patient education and self-management activities for a variety of chronic medical conditions. Regarding epilepsy self-management more specifically, a patient brochure on the practice is distributed by the VHA Epilepsy Centers of Excellence (ECoEs) and an associated consortium.22 Last, a national provider educational lecture series has a corresponding patient and caregiver lecture set that emphasizes education and self-management behaviors.
Labor, Time, and Resource Needs
The most time-intensive aspect of designing self-management programs is developing the tool that allows clinicians and patients to work together. From a program perspective, the tool must be available and helpful not only to patients and specialists, but also to primary care providers. Tertiary-care centers usually accept the responsibility for program initiation, including patient recruitment, logistics coordination, and health care professional staffing. For epilepsy, the small pool of relevant specialists and centers limits the number of self-management education sessions that can be hosted and increases the need for complex travel and scheduling tasks. However, ECoE communication lines provide a basic infrastructure for collaboration and for development of tools that can be helpful to all clinicians treating veterans with epilepsy.23
Given the issues with coordinating the logistics of in-person programs at brick-and-mortar sites, this type of program may not be the best option for some patients and facilities. Alternative approaches, such as telehealth and asynchronous digital platforms, could expand access and increase convenience. Even though remotely administered programs may not be as powerful for some patients, the promise of scalable access supports consideration of these approaches.
Patient and Caregiver Logistics
Veterans with epilepsy may also have comorbid traumatic brain injury (TBI) and posttraumatic stress disorder, which can complicate self-managed care. In addition, many veterans live in rural areas and have limited travel options. All these factors challenge the success of epilepsy self-management programs. However, the network of ECoEs and associated consortium facilities can step up to deliver self-management tools and information.
The infrastructure of the VHA patient aligned care team (PACT) also contributes to the integration of self-management training. The PACT model takes a personalized, comprehensive, coordinated approach to promote team-based, veteran-centric care and actively partners with other VHA offices to incorporate alternative care services, including peer support and self-management platforms. The combination represents fertile ground for implementation and promotion of self-management tools in the VHA epilepsy population.
Health Care Economics
Given the uncertainties of the US health care economy, it is not surprising that many experts advocate a fundamental redesign of the health care team relationship and information infrastructure.24 This realignment includes partnering directly with patients and their families to encourage more reliance on self-management practices. Unfortunately, this approach does not lend itself to the well-entrenched business model on which most community medical practices are based. Health system leadership often must be convinced there are potential cost savings or a return on investment for new programs. As there is no consistent, comprehensive reimbursement policy for programs focused on self-management, health care systems must be creative and innovative when appraising the financial consequences of such programs.
