The Preparedness Gap Patients Do Not Know They Have

Key Takeaways:

• Many patients continue to have seizures yet do not plan to raise changing their treatment, and fewer than half feel well-controlled.
• Awareness of acute and rescue options is low, so patients often do not know there is a plan to ask for.
• Proactively opening the acute-planning conversation closes a gap that patients rarely close on their own.

Patient satisfaction with epilepsy care is generally high, which can be read as a signal that little needs to change. The 2026 Epilepsy In America survey complicates that reading. Many patients who continue to have seizures are neither planning to revisit their treatment nor aware of the acute options available to them. Satisfaction, in other words, is not the same as good seizure control or comprehensive epilepsy care, and the gap tends to stay invisible unless the clinician asks about it directly.¹

Still seizing, not asking

The disconnect is quantifiable. While 58 percent of survey respondents strongly agreed they were satisfied with the team treating their epilepsy, only 47 percent felt their epilepsy was well-controlled on their current plan, and 60 percent had experienced a seizure within the past year.¹

Yet just 25 percent planned to speak with their doctor about changing or adding to their treatment in the next 6 months. While survey data cannot explain why, the findings suggest that ongoing seizures alone do not consistently prompt treatment discussions.¹

Notably, more respondents – 38 percent – said they actively sought information about newer treatments than planned to discuss treatment changes with their clinician. This suggests that interest in new treatments does not always translate into conversations during routine follow-up visits.¹

One respondent described having "just gave up and now just deal with it." Another framed living with epilepsy as "a matter of accepting it rather than fighting" it. For some patients, ongoing seizures have become something to endure rather than a reason to revisit the treatment plan.¹

A low-awareness gap

One possible explanation is that patients are simply unaware of the treatment options available to them. Awareness of acute and rescue options was low: About 1 in 5 respondents recognized nasal diazepam (20 percent), and fewer recognized nasal midazolam (18 percent), while a quarter recognized none of the treatments listed.¹

This sits alongside a clear appetite for information: Treatment options were the single most requested type of content (58 percent), and more than 40 percent wanted to hear about other patients' experiences with treatments. In other words, patients want to learn about treatment – but that interest is not reaching acute and rescue options specifically, suggesting that awareness of treatment options remains limited.¹

Taken together, these findings suggest that many patients are interested in learning more about treatment but may not receive information about rescue therapies during routine care.

Opening the door

Not every patient with epilepsy needs a rescue medication. The decision depends on the individual's seizure pattern, history of seizure clusters or prolonged seizures, caregiver support, and overall risk profile. One goal of discussing seizure preparedness during routine follow-up visits is to identify the patients who are most likely to benefit from having one available.

Because many patients do not initiate these conversations on their own, the clinician should routinely ask about them. A direct prompt – asking whether seizures occur in clusters, what typically happens after a breakthrough seizure, whether someone is available to help, and whether the patient has rescue medication or knows when it should be used – reframes the visit from maintenance toward readiness. Patients' stated interest in treatment information offers a natural entry point: A clinician can meet that interest by introducing acute and rescue planning as a routine part of seizure safety counseling for patients at risk of breakthrough seizures or seizure clusters rather than something reserved for the most severe cases.

That framing matters because some patients may normalize ongoing seizures over time and therefore may be less likely to bring up concerns unless they are asked directly. Simply asking about seizure preparedness can uncover unmet needs, identify patients who may benefit from rescue therapy, and ensure that patients and caregivers know what to do if a breakthrough seizure or seizure cluster occurs.