Do Seizure Action Plans Make a Difference for Patients and Families?

Caregivers for children with epilepsy were more likely to bring their children to regularly scheduled clinic visits if they had previously been given a printed seizure action plan tailored to help them understand their child’s condition, manage it at home and know what to do in an emergency.

A year after receiving the action plan, caregivers whose child experienced fewer than 12 seizures annually said they were significantly more comfortable with seizure care than caregivers who did not receive the plan.

The findings, published in the Journal of Child Neurology, come from what researchers at Nationwide Children’s Hospital believe is the first randomized controlled study of a seizure action plan.

“Seizure action plans have been used for a while now…but are families benefitting?” asks Dara Albert, DO, a neurologist at Nationwide Children’s and lead author of the study.

“The idea behind these plans is if a person is better educated to help manage epilepsy, they may go to the emergency department less and be admitted less,” Dr. Albert says. “But we did not find a statistical difference in unplanned health care utilization between families who received the plan and those who did not.”

In their prospective study of 100 patients, researchers found that 45% of patients who received the action plan made all of their clinical appointments in a year, compared to 25% of patients who received no written plan.

The researchers modeled their seizure action plan after an asthma action plan created and verified by Nationwide Children’s Pulmonary and Primary Care clinics. The plan is divided into color-coded sections: green outlines care for a child when seizures are under control; yellow when a parent has concerns, such as a missed dose of medication or brief seizure; and red in case of emergencies, such as a prolonged seizure or seizure clusters.

Beyond determining health care utilization, the researchers looked at quality-of-life measures at enrollment and 3 and 12 months afterward. Families filled out the Impact on Families questionnaire, which was modified to include epilepsy-specific questions. The seizure comfort score of families whose child had fewer than 12 seizures per year averaged 18.8 if they had been given a plan and 17.5 if not.

“Less health care utilization isn’t the only thing families want,” says Anup Patel, MD, section chief of Pediatric Neurology at Nationwide Children’s and study co-author. “If you have a newly diagnosed child, a seizure action plan can help reduce anxiety and help the family feel more confident. They can be more comfortable with an action plan.”

Drs. Albert and Patel suggest a large, multi-site study may help explain the findings and reveal whether action plans are effective in other ways or more useful for certain subgroups of patient families.

Reference:

Albert DVF, Moreland JJ, Salvator A, Moore-Clingenpeel M, Haridas B, Cole JW, Glynn P, Fults M, Dawson MZ, Moreland P, Patel AD. Seizure action plans for pediatric patients with epilepsy: a randomized controlled trial. Journal of Child Neurology. 2019 Jun 2:883073819846810.