Hope for the Best but Plan for the Worst: Seizure Action Plans in Adult Epilepsy Clinics

Abstract

Evaluation of a Seizure Action Plan in an Adult Epilepsy Center

Long L, Reynolds SS, Lewis LS, Webb MA, Epley C, Maturu S. Neurol: Clin Pract 2024;14:e200275. doi:10.1212/CPJ.0000000000200275

Background: Seizure action plans (SAPs) provide valuable information for patients to manage seizure emergencies, but are underutilized in adult epilepsy centers. The purpose of this project was to implement a structured SAP for adult patients with epilepsy. Methods: A pre-/post-implementation design was used. Provider SAP utilization rates were analyzed over a 16-week period. A pre- and post-implementation survey assessed participants' perceived impact of the SAP on knowledge and comfort associated with managing seizure emergencies. Provider barriers and facilitators were also assessed. Results: The average provider SAP utilization rate was 51.45%. A total of 204 participants completed the surveys, which showed a significant increase in knowledge and comfort for all items, P < .001. At post-survey analysis, 98% of participants felt that all patients with epilepsy should have an SAP regardless of seizure burden. Discussion: Implementing a structured SAP increased provider utilization and patient and care partner knowledge and comfort in managing seizure emergencies.

Commentary

“Failing to plan is planning to fail.” Clinicians have many tasks during a short visit. Arriving at a correct diagnosis and treatment plan involves analyzing and responding to the past. But a related yet distinct topic involves being prepared for the future.

This is particularly true when educating patients about seizure emergencies. Patients need many things to be prepared in case of future long or clustered seizures, such as knowledge about how to recognize a seizure emergency, thresholds for action, what action to take, and ability to take such action. Seizure clusters have many potential adverse consequences on quality of life, Sudden Unexplained Death in Epilepsy, and emergency utilization. ¹

How can we best prepare our patients in case of a seizure emergency? Usual care may involve an unstructured conversation between doctor and patient addressing as many topics as felt pertinent. However, unstructured processes oftentimes miss important components of care. Therefore, Seizure Action Plans (SAPs) have been developed to enhance efficient patient–doctor communication and clarify instructions.^2,3 Prior literature has pointed to markedly improved rates of provider uptake and caregiver knowledge about seizure emergencies after implementing standardized SAPs within a pediatric setting. ⁴

Long et al ⁵ recently addressed this topic. Shockingly, their exposition states that nobody has previously studied the implementation of SAPs in adult neurology tertiary care. They recruited 204 adult patients or their caregivers with a return visit for epilepsy. They administered 9 items, each rated on a Likert scale from 1 to 4 assessing self-rated knowledge or comfort such as, “I know how to recognize seizure emergencies,” or “I am comfortable recognizing seizure emergencies.” Participants completed the survey immediately before a clinic visit, then were supposed to be provided and educated regarding their personalized formal SAP during a visit as delivered by 1 of 5 participating clinicians, then repeated the items.

Utilization (whether the patient actually left the clinic with a SAP) was initially about 70%, at worst dipped to 33% within a couple of months, and averaged ∼50% across the 4-month study period. Barriers to use included the amount of time during a patient visit needed to complete the SAP, forgetting to complete it, or provider perception of SAP relevance. Facilitators included triage nurses and patients helping with SAP completion.

They also assessed how items changed “pre” versus “post” visits, particularly for those who responded to each item with a “1” (strongly disagree) or a “2” (disagree) on each item. Every measure improved (P < .001). For example, among the 54 (26%) who disagreed with knowing how to recognize seizure emergencies before the visit, 45 (83%) thereafter agreed with the statement. Likewise, among the 49 who did not feel comfortable recognizing seizure emergencies beforehand, 45 (92%) felt comfortable afterward.

This study provides proof of concept favoring simple, fast methods to enhance patient education and preparedness. It stands to reason that if patients and caretakers are provided clear, simple instructions, knowledge and comfort will increase. Granted, in this study one cannot distinguish the effect of simply having an office visit, versus having a visit with clinicians who have been particularly primed to deliver this information, versus the effect of walking away from a visit with the written SAP itself. Additionally, measures were purely based on self-report, which may or may not reflect a patient's true knowledge or self-efficacy and have imperfect test–retest reliability. Regardless, this suggests that we do have in our power the ability to improve patient counseling by taking a disciplined, focused approach.

The story doesn’t end here with “utilization” or hypothetical “comfort” when answering a Likert scale immediately after a visit. Questions persist regarding the optimal content of a SAP, such as what medication or at what dose. For example, underdosing benzodiazepines remains a known, pervasive, and difficult problem, thus perfect knowledge of an SAP that specifies a nonoptimized treatment may still not be enough. Moreover, knowledge may not necessarily translate into action, and action is not guaranteed to translate into outcomes. Even with an ideal SAP and perfect understanding immediately following the clinic visit, the patient still must fill the desired rescue prescription, have it available when it counts, and be with an individual at the moment who is knowledgeable about the plan, and if the seizure is going to self-terminate by itself then the rescue would have made little difference. Much like how in this study clinician utilization waned over time, patient utilization might do the same. Perhaps for these reasons, in 1 randomized trial, SAPs improved self-rated knowledge but not acute utilization. ⁶

It is interesting to note that while this study focused on the ∼25% with poor initial self-ratings, about 75% of participants actually considered themselves to have relatively high pre-visit subjective comfort and knowledge, such as recognizing and managing a seizure emergency. Granted, just because a patient feels comfortable or knowledgeable in a particular situation does not guarantee that their conception aligns with what the clinician would want them to do. Also, this study was conducted at a tertiary academic center, where clinician expertise likely exceeds many other settings. But still, this signals an opportunity for individualized education tailored to those who need it most. This is only reinforced by the study's finding that a chief barrier to SAP use was clinician perception that not all patients needed one, such as those with infrequent seizures.

An important implied component of this discussion is that we are fortunate to have many available options for seizure rescue treatments, each of which is effective and suited to different settings. ⁷ This includes oral administration of tablets or dissolvable wafers to intranasal or rectal alternatives with rapid onset of action. Recent advances in outpatient rescue therapies have centered upon breath-actuated orally inhaled alprazolam, ⁸ which remains a promising novel route in the pipeline for even faster absorption. With these increasing options, it is becoming even more important to have a plan regarding how to educate and deliver these treatments to patients who may benefit the most from them. Questions surrounding the optimal implementation of effective interventions are no less challenging or important than questions surrounding how effective a treatment is. Further quality improvement work such as this therefore remains critical to advancing patient care.