Seizure action plans: More than management tools for epilepsy

By Nancy Volkers, ILAE communications officer

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Cite this article: Volkers N. Seizure action plans: More than management tools for epilepsy. Epigraph 2024; 26(2): 94-99.

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Historically, seizure action plans have focused on certain high-risk groups — such as people with drug-resistant epilepsy and people with a history of status epilepticus or seizure clusters. Neurology nurse practitioner Lucretia Long advocates that everyone with epilepsy should have a seizure action plan.

“It’s important that we start to think about changing the paradigm for what an action plan is,” said Long, from The Ohio State University Wexner Medical Center, USA. “It's really an educational tool.”

A seizure action plan is meant to provide guidance and information for people with epilepsy and their caregivers about the treatment plan, as well as steps to take during a potential seizure emergency. The customized information seizure action plan may benefit anyone who regularly interacts with the person with epilepsy, including parents, caregivers, relatives, schoolteachers, coworkers, and friends.

Seizure action plans in pediatric epilepsy care

At least in some high-income countries, seizure action plans are a standard part of pediatric epilepsy care—often because schools require them. While the US Epilepsy Foundation, the Child Neurology Foundation, and other groups have produced ready-to-use seizure action plans, there is no agreement on how a plan should look, what it should include, or how (and how often) it should be discussed and updated.

Sample of a seizure action plan

A few studies have tried to assess the effectiveness of seizure action plans, usually by focusing on health care utilization before and after a seizure action plan is implemented. A 2017 study found that seizure action plans did not reduce emergency department visits, hospitalizations, clinic visits, or telephone calls in a pediatric population. A 2019 clinical trial in children found similar results: Seizure action plans had no real impact on health care utilization, although families receiving seizure action plans were less likely to no-show at clinic appointments, compared with families in the control group.

The limited data and lack of robust effects are not reflective of the importance of seizure action plans, said Dara Albert, lead author of the 2019 clinical trial. Albert is a pediatric neurologist and epileptologist at Nationwide Children’s Hospital in Columbus, Ohio, USA.

“We weren’t able to show a huge impact on health care utilization, but overall we felt like there were indications that the seizure action plan is helpful,” Albert said. For example, she said, families who received a seizure action plan were more confident in managing their child’s epilepsy. Seizure action plans appeared to have more positive impacts on families with children who had fewer seizures, compared with those with children who had very frequent seizures.

Albert said that having an action plan can increase confidence in managing epilepsy for other members of the community: Babysitters, grandparents, teachers, and child-care providers.

“We see a lot of families that are maybe afraid to send their child on a sleepover, or other family members are afraid to take the child for the night,” said Albert. “Having an action plan to share with other caregivers hopefully would be helpful—but that impact isn’t really measurable in a study like we did. Clinical trials are not asking those sorts of questions, and they are important.”

Educating families through seizure action plans

The educational value of a seizure action plan makes it of universal importance, and not limited to high-income countries, noted Long.

“I feel very strongly that we can customize these seizure action plans to focus on educating,” she said. “Seizure triggers are seizure triggers, and so we can educate patients on what those triggers are. And we can talk about seizure first aid—ensuring that people aren't putting items in the mouth, making sure that they're turning the person on their side, minimizing related injury.”

Kerri Neville and colleagues conducted a study of implementing a standardized seizure action plan in several pediatric neurology clinics. The plan was integrated into the electronic medical record (EMR) and providers were encouraged to use it. Over the course of the study, provider utilization increased from zero to 58%.

Before seizure action plan implementation, about 30% of caregivers did not know their child’s seizure type or epilepsy syndrome type, and 9% did not know when to consider a seizure an emergency, or what to do in the case of an emergency.

After implementation, “We found that parents who received a seizure action plan were more knowledgeable about their child’s epilepsy,” said Neville, a pediatric epileptologist at the University of Michigan, USA. “More of them could identify the emergency plan at their child’s school, and more of them could identify when their child’s seizure has become an emergency and what they should do in those situations.”

While Neville and colleagues were aware of prior studies that focused on health care utilization, they chose to focus on education-centered outcomes.

“These were measures that we could look at and say okay, this might not be changing the overall course of the person’s epilepsy, but [a seizure action plan] can be an empowering communication tool for families,” Neville said.

Seizure action plans for adults

Long and colleagues conducted research on implementing a seizure action plan in an adult epilepsy center. The six-month initiative boosted provider utilization rates from zero to 51%, and the group saw clinically relevant improvements in scores on epilepsy knowledge and comfort managing seizures in both people with epilepsy and their care providers.

Nearly all people with epilepsy and care providers in the study—98%—believed that seizure action plans should be given to everyone with epilepsy. However, the 51% utilization rate indicated that about half of providers did not provide plans to their patients.

Why?

The time issue

Time constraints are the most-cited barrier to implementing universal seizure action plans. To save provider time, Long’s group used a straightforward, one-page plan that patients and their care providers worked to complete before a visit.

“Some of them were very familiar with their triggers and the semiology,” said Long. “So they could document all of that before the health care professional finalized the plan.”

Making a seizure action plan available through an EMR system can allow providers to create and update a plan in just a few clicks. Albert said that the seizure action plan that her clinic developed is available in the EPIC Community Library for anyone to use.

“Having it embedded in our workflow definitely cuts down on the time factor,” she said.

Neville’s clinic has found that having a seizure action plan in the EMR has improved communication between providers.

“It’s become second nature for everyone, even outside the neurology departments, to know that this exists and where to find it,” she said. “Having this unified, well documented, clear place in the EMR has been really helpful.”

Rather than focusing on time as a barrier, Tobias Loddenkemper suggested reframing the issue.

“Five percent of your time invested now can save time in the future,” said Loddenkemper, director of epilepsy clinical research at Boston Children’s Hospital and professor of neurology at Harvard Medical School, Massachusetts, USA. “It’s a shift toward preventive care.”

Loddenkemper likened a seizure action plan to a household fire emergency plan. “I hope we will never have a fire in our house, but my family have discussed what to do if it happens,” he said. “That is what seizure action plans and self-management curricula can provide for families: Thinking about the problem and being prepared. This could promote adherence to medications, because you talk about risk factors that could bring on an emergency, like missing medication.”

Diabetes action plans

Seizure action plans have been modeled on plans for other chronic diseases, such as diabetes and asthma. In the case of diabetes, health care professionals can become certified diabetes educators, helping families adjust to the diagnosis and providing ongoing education and support.

At Boston Children’s Hospital, every child with diabetes receives an action plan, said Kristen Rice, a certified diabetes educator there. “Years ago, one of the fellows had worked in a primary care setting before and thought an action plan could help families decide when to page us and when to use other resources,” she said. “We’ve definitely found it useful, and families have found it useful.”

The action plan is revamped regularly. “We try to make it clearer and more user friendly because there’s so much information that families get,” said Rice. “We tell families to put the action plan on the fridge, keep an electronic copy on their phone, make sure there are copies wherever it’s needed.”

Rice also discusses the seizure action plan with teenagers and young adults as they transition from pediatric to adult diabetes care. “It’s a nice visual tool for them,” she said.

Seizure action plans to improve outcomes

A lack of standardized training and support are major challenges to implementing seizure action plans more widely, said Loddenkemper. While there are many examples and recommendations for the elements of a seizure action plan, specific curricula or policies to implement the plans are missing. Diabetes nurse educators like Rice are certified through standardized training, testing, and continuing education.

“We don’t have that in epilepsy,” said Loddenkemper. “The hope would be that funding agencies and insurance providers take a preventive stance and help us save lives, shorten hospital stays, prevent emergency visits.”

“Universal seizure action plans are a worthy goal,” said Albert. “Education is empowerment, right? For patients and families, whether they are children or adults, it's empowerment to understand your disease, understand your risks. Though some people outgrow their seizures, epilepsy is a chronic condition that many people will deal with for most of their lives.”

Resources:

More information for providers and a list of published studies on seizure action plans

Sample seizure action plans: English, Spanish, Simplified Chinese, Korean, Tagalog, Vietnamese, Ukrainian

Online fillable seizure action plan: English (Child Neurology Foundation)

Plan de acción para las convulsiones rellenables en línea: Español (Child Neurology Foundation)

Family stories about the power of seizure action plans