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Traditionally, seizure motion plans have targeted on sure high-risk teams—reminiscent of individuals with drug-resistant epilepsy and folks with a historical past of standing epilepticus or seizure clusters. Neurology nurse practitioner Lucretia Lengthy advocates that everybody with epilepsy ought to have a seizure motion plan.
“It’s important that we start to think about changing the paradigm for what an action plan is,” mentioned Lengthy, from The Ohio State College Wexner Medical Middle, U.S. “It’s really an educational tool.”
A seizure motion plan is supposed to offer steering and knowledge for individuals with epilepsy and their caregivers concerning the remedy plan, in addition to steps to take throughout a possible seizure emergency. The custom-made info seizure motion plan might profit anybody who recurrently interacts with the particular person with epilepsy, together with dad and mom, caregivers, family members, schoolteachers, coworkers, and associates.
Seizure motion plans in pediatric epilepsy care
A minimum of in some high-income international locations, seizure motion plans are a regular a part of pediatric epilepsy care—actually because faculties require them. Whereas the US Epilepsy Basis, the Baby Neurology Basis, and different teams have produced ready-to-use seizure motion plans, there isn’t a settlement on how a plan ought to look, what it ought to embrace, or how (and the way usually) it ought to be mentioned and up to date.
Just a few research have tried to evaluate the effectiveness of seizure motion plans, normally by specializing in well being care utilization earlier than and after a seizure motion plan is carried out. A 2017 examine discovered that seizure motion plans didn’t cut back emergency division visits, hospitalizations, clinic visits, or phone calls in a pediatric inhabitants.
A 2019 scientific trial in youngsters discovered comparable outcomes: Seizure motion plans had no actual impression on well being care utilization, though households receiving seizure motion plans have been much less more likely to no-show at clinic appointments, in contrast with households within the management group.
The restricted information and lack of sturdy results aren’t reflective of the significance of seizure motion plans, mentioned Dara Albert, lead writer of the 2019 scientific trial. Albert is a pediatric neurologist and epileptologist at Nationwide Youngsters’s Hospital in Columbus, Ohio, U.S.
“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 mentioned. For instance, she mentioned, households who acquired a seizure motion plan have been extra assured in managing their kid’s epilepsy. Seizure motion plans appeared to have extra constructive impacts on households with youngsters who had fewer seizures, in contrast with these with youngsters who had very frequent seizures.
Albert mentioned that having an motion plan can enhance confidence in managing epilepsy for different members of the group: Babysitters, grandparents, lecturers, and child-care suppliers.
“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,” mentioned Albert. “Having an action plan to share with other caregivers would hopefully 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 households by way of seizure motion plans
The tutorial worth of a seizure motion plan makes it of common significance, and never restricted to high-income international locations, famous Lengthy.
“I feel very strongly that we can customize these seizure action plans to focus on educating,” she mentioned. “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 carried out a examine in 2020 about implementing a standardized seizure motion plan in a number of pediatric neurology clinics. The plan was built-in into the digital medical report (EMR) and suppliers have been inspired to make use of it. Over the course of the examine, supplier utilization elevated from zero to 58%.
Earlier than seizure motion plan implementation, about 30% of caregivers didn’t know their kid’s seizure sort or epilepsy syndrome sort, and 9% didn’t know when to think about a seizure an emergency, or what to do within 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,” mentioned Neville, a pediatric epileptologist on the College of Michigan, U.S. “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.”
Whereas Neville and colleagues have been conscious of prior research that targeted on well being care utilization, they selected to concentrate 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 mentioned.
Seizure motion plans for adults
Lengthy and colleagues carried out analysis on implementing a seizure motion plan in an grownup epilepsy middle. The six-month initiative boosted supplier utilization charges from zero to 51%, and the group noticed clinically related enhancements in scores on epilepsy data and luxury managing seizures in each individuals with epilepsy and their care suppliers.
Practically all individuals with epilepsy and care suppliers within the examine—98%—believed that seizure motion plans ought to be given to everybody with epilepsy. Nonetheless, the 51% utilization charge indicated that about half of suppliers didn’t present plans to their sufferers. Why?
The time subject
Time constraints are the most-cited barrier to implementing common seizure motion plans. To avoid wasting supplier time, Lengthy’s group used an easy, one-page plan that sufferers and their care suppliers labored to finish earlier than a go to.
“Some of them were very familiar with their triggers and the semiology,” mentioned Lengthy. “So they could document all of that before the health care professional finalized the plan.”
Making a seizure motion plan out there by way of an EMR system can permit suppliers to create and replace a plan in just some clicks. Albert mentioned that the seizure motion plan that her clinic developed is on the market within the EPIC Neighborhood Library for anybody to make use of.
“Having it embedded in our workflow definitely cuts down on the time factor,” she mentioned.
Neville’s clinic has discovered that having a seizure motion plan within the EMR has improved communication between suppliers.
“It’s become second nature for everyone, even outside the neurology departments, to know that this exists and where to find it,” she mentioned. “Having this unified, well-documented, clear place in the EMR has been really helpful.”
Relatively than specializing in time as a barrier, Tobias Loddenkemper advised reframing the difficulty.
“Five percent of your time invested now can save time in the future,” mentioned Loddenkemper, director of epilepsy scientific analysis at Boston Youngsters’s Hospital and professor of neurology at Harvard Medical Faculty, Massachusetts, U.S. “It’s a shift toward preventive care.”
Loddenkemper likened a seizure motion plan to a family hearth 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 mentioned. “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 motion plans
Seizure motion plans have been modeled on plans for different persistent ailments, reminiscent of diabetes and bronchial asthma. Within the case of diabetes, well being care professionals can develop into licensed diabetes educators, serving to households regulate to the prognosis and offering ongoing training and assist.
At Boston Youngsters’s Hospital, each little one with diabetes receives an motion plan, mentioned Kristen Rice, a licensed 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 mentioned. “We’ve definitely found it useful, and families have found it useful.”
The motion plan is revamped recurrently. “We try to make it clearer and more user-friendly because there’s so much information that families get,” mentioned 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 additionally discusses the seizure motion plan with youngsters and younger adults as they transition from pediatric to grownup diabetes care. “It’s a nice visual tool for them,” she mentioned.
Seizure motion plans to enhance outcomes
A scarcity of standardized coaching and assist are main challenges to implementing seizure motion plans extra broadly, mentioned Loddenkemper. Whereas there are various examples and suggestions for the weather of a seizure motion plan, particular curricula or insurance policies to implement the plans are lacking. Diabetes nurse educators like Rice are licensed by way of standardized coaching, testing, and persevering with training.
“We don’t have that in epilepsy,” mentioned 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,” mentioned 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.”
Extra info:
Data for Healthcare Suppliers: seizureactionplans.org/physici … s-medical-providers/
Supplied by
Worldwide League In opposition to Epilepsy
Quotation:
Seizure motion plans: Administration and academic instruments in epilepsy care (2025, April 23)
retrieved 24 April 2025
from https://medicalxpress.com/information/2025-04-seizure-action-tools-epilepsy.html
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