Abstracts

Rationale: There have been advances in therapies for epilepsy, but many persons still experience frequent adverse outcomes, such as negative health events (NHEs), including seizures, emergency department visits, hospitalizations and self-harm attempts. Breakthrough seizures are common, despite the use of daily anti-seizure medications (ASMs). Immediate use anti-seizure medications, also referred to as rescue medication (RM) can provide better management for those with repetitive seizures, but several barriers can influence appropriate RM use. Existing education and support materials for RM administration are typically not incorporated into comprehensive care packages for people with epilepsy (PWE). Self-management for people with epilepsy and a history of negative health events (SMART) is an evidence-based epilepsy self-management program targeted at reducing barriers and maximizing facilitators to self-care in high risk PWE.

Methods: This 2-Phase, ongoing study is adapting SMART to integrate support for use of RM for PWE. Phase 1, now completed, used input from an advisory board (AB) consisting of PWE, caregivers of PWE, and epilepsy care clinicians to modify the SMART curriculum and incorporate education and support for the use of diazepam nasal spray (Valtoco^®, FDA approved for the acute treatment of intermittent, stereotypic episodes of frequent seizure activity), as seizure rescue medication (RM). Phase 2 will test effects of the adapted curriculum (SMART-RM) in a 6-month prospective trial (N=35), assessing engagement and effects on seizure clusters among adult PWE. The primary outcome for Phase 2 will be change in seizure counts from baseline to 6-month follow-up. Secondary outcomes will include change in quality of life, NHEs, functional status, and depression severity.

Results: The AB for Phase 1 enrolled 6 individuals who participated in 3 meetings: 2 PWE, 2 caregivers, and 2 clinicians. PWE were 1 female, 1 male; age 35 and 39 with onset of epilepsy at age 33 and 20 years, respectively. Participants endorsed the need for evidence-based epilepsy self-management curricula that include support for RM use and positively endorsed the format /duration of the SMART curriculum. Specific additional novel content requests included: 1.) A seizure safety action plan customized to include RM, 2.) Education for caregivers regarding RM, 3.) Customized care plans that can be created by the PWE themselves to help guide/support caregivers (such as school personnel or group home staff), 4.) A template whereby PWE participating in the SMART-RM develop a general epilepsy goal as well as a goal specifically related to RM, and 5.): A template whereby PWE identify/target topics specific to RM that will facilitate focused discussion with epilepsy care providers. The AB also suggested practical use of visual prompts (refrigerator magnets, post-it signs) to help reinforce SMART-RM content.

Conclusions: Specific and actionable content for integrating the use of immediate use RM into an evidence-based epilepsy self-management curriculum provides a comprehensive package of care that has potential to advance care for PWE with seizure clusters.

Funding: Neurelis