The report is a product of the VA/HSR&D Evidence Synthesis Program.
Self-Management of Epilepsy: A Systematic Review
Epilepsy is a neurological disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. Epilepsy affects about 50 million people worldwide and is one of the most common chronic neurological conditions, with the potential to generate significant morbidity, impaired quality of life, socioeconomic decline, and high healthcare costs. In 2016, an estimated 79,576 Veterans were treated for epilepsy in the VA healthcare system; almost half were 65 years of age or older. Self-management is essential for many patients who live with a chronic disease, and the VA and other health systems are interested in offering self-management training to patients with epilepsy. Improved self-management skills could improve medication adherence, avoidance of seizure triggers, and improve patient and family knowledge about when to seek urgent medical care.
Self-management training helps people learn about their illness, and may involve symptom monitoring, medication management, learning problem-solving and decision-making skills, safety promotion, or changing physical activity, dietary, and/or smoking behaviors.
The current systematic review was requested by VA's National Neurology Program Office in the Office of Specialty Care Services, which is responsible for policies and programs for neurological disorders in VA nationally. The review will be used to identify the current evidence base and its quality to support the use of self-management programs aimed at patients with epilepsy, and to identify potential barriers in the adoption of these programs within VA. Investigators with VA's Evidence-based Synthesis Coordinating Center in Durham, NC reviewed the literature including: MEDLINE®, Cochrane Central Register of Controlled Trials, PsycINFO, and CINAHL from inception to 4/13/18. Investigators identified 15 studies that examined the effects of self-management for epilepsy (including 13 randomized controlled trials and 2 non-randomized trials; 2,514 patients) and 13 studies that addressed the implementation and adoption of interventions. No studies directly addressed implementation and adoption issues for large health systems such as VA.
Summary of Review
This protocol-based review found that most studies enrolled mid-life adults with at least some college education. The median time since diagnosis of epilepsy was 18 years. Over one-half of studies were conducted in the United States, and only one enrolled Veterans. Self-management was compared with usual care, waitlist, or attention controls in all but one randomized study, a study that compared two therapy interventions. Self-management training was typically done in groups over two consecutive days or in up to eight weekly sessions.
Tested interventions for the self-management of epilepsy were deemed to fit into two categories:
- Educational self-management interventions
- Modules and discussions aimed at increasing knowledge around symptoms, triggers, and psychological, social, and vocational problems that can arise with epilepsy.
- Psychosocial therapy self-management interventions
- Techniques include multi-component therapies such as problem-solving treatment (PST), and cognitive behavioral therapy (CBT) alone or paired with specific behavioral activation components or proactive coping skills. (PST is a behavioral approach that addresses problems such as social isolation and lack of physical activity).
These self-management interventions showed clinically important benefit for only a limited number of outcomes. Education-based self-management approaches improved self-management behaviors moderately, and psychosocial therapy-based approaches improved quality of life modestly. Overall, self-management interventions did not decrease seizure rates, but one educational intervention decreased a composite of seizures, emergency department visits, and hospitalizations.
Findings on facilitators and barriers to intervention implementation were stronger and point to a clearer path to the design and adoption of self-management interventions, including factors of patient personalization, information delivery, use of technology, and intervention personnel. For example, the role of the clinician is important to the implementation of the intervention. The clinician should be appropriately trained, have the duties of the intervention incorporated into their dedicated clinical time, and be provided with clearly written, standardized protocols that articulate the clinician's role in the intervention.
This review addressed outcomes important to decision-making but should be considered as only one input into any decision about implementing and adopting self-management interventions that provide education and support more broadly for patients with epilepsy and their caregivers. Other outcomes, such as effects on patient experience and emotional well-being, may be important. Resources required to implement effective programs, whether to provide services to all or targeted to patients with epilepsy, and competing quality improvement initiatives should be considered. If VA were to move to implement and adopt self-management services for patients with epilepsy through VA's 16 Epilepsy Centers of Excellence network or more broadly through VA PACTs (Patient-Aligned Care Teams), the description of intervention components and synthesis of implementation and adoption barriers and facilitators in this review could inform that effort.
Future research on self-management programs for adults with epilepsy should be designed to address implementation issues, and this research should include standardized outcome measures prioritized by patients and other stakeholders and Veteran populations. For example, research is needed with patients who are earlier in their course of illness, as well as studies specifically focused on older adults with epilepsy. Patients with epilepsy expressed a desire for an intervention team composed of a person with epilepsy and a clinician interventionist to provide self-management education and support. Future research should further examine the composition of this dyad and identify who the clinician interventionist should be (i.e., registered nurse, advanced practice registered nurse, physician, or physician assistant). In addition, more research is needed to identify best practices for technology-based self-management interventions for patients; however, technology use for self-management is highly dependent on individual characteristics such as familiarity with and ownership of technological devices (e.g., mobile phones and computers).
The most recent study included in this systematic review — the SMART intervention by Sajatovic and colleagues — enrolled Veterans and is an example of a well-structured and well-reported study, which included healthcare utilization and safety outcomes that were not reported in other studies (Sajatovic et al, 2018). Future investigators should consider the SMART trial as a model for study design, and sources of research support could use it as a guide for funding subsequent work in epilepsy self-management.
Luedke MW, Blalock DV, Lewinski AA, Shapiro A, Drake C, Lewis JD, Goldstein KM, Husain AM, Gierisch JM, Sinha SR, Tran TT, Gordon AM, Kosinski AS, Bosworth HB, Van Noord M, Williams JW Jr. Self-management of Epilepsy. VA ESP Project #09-009; 2019.
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