Patients With Epilepsy May Underreport Seizures, Survey Finds

Jake Remaly

May 07, 2020


Patients with epilepsy may report less than half of their seizures to clinicians, according to survey results presented online as part of the 2020 American Academy of Neurology Science Highlights.

Clinicians, for their part, may underestimate the number of seizures that go unreported. This disconnect may contribute to complacency about epilepsy treatment regimens among patients, caregivers, and health care professionals (HCPs), despite continuations in seizures. "Improved reporting of all seizure occurrences and more frequent discussion of potential treatment changes, initiated by all groups, may be needed to optimize treatment outcomes," said Patricia E. Penovich, MD, a neurologist at Minnesota Epilepsy Group in St. Paul, and colleagues.

To evaluate treatment complacency among adult patients with epilepsy, caregivers, and HCPs, Dr. Penovich and collaborators analyzed data from the STEP survey (Seize the Truth about Epilepsy Perceptions), which was conducted between February and March 2019. In all, 400 adults with epilepsy, 201 caregivers, and 258 HCPs completed the survey. The HCPs included 96 epileptologists, 112 general neurologists, and 50 nurse practitioners or physician assistants.

Patients had an average epilepsy duration of 16 years, and 58% were on at least their third antiepileptic drug (AED). In the past year, 52% of patients had 1-9 seizures, and 31% had 10 or more seizures. "Patients estimated reporting 45% of their seizures to their HCPs, and for the seizures not reported, 57% provided reasoning that they were not serious enough to mention," reported Dr. Penovich and colleagues. "Alternatively, HCPs estimated that patients report 73% of seizures."

Survey participants most frequently selected HCPs as the ones to initiate conversations about changing AEDs or increasing dosage. "Patient-initiated discussions were reported by 39% of patients for changing AEDs and 27% of patients for increasing AED dosage; 25% of patients reported they were likely to ask their HCP about changing treatments in the next 12 months," the authors said. Discussion of vagus nerve stimulation was reported by 21% of HCPs, and 10% reported discussion of responsive neurostimulation. HCPs also discussed surgical options such as hemispherectomy (3%), corpus callosotomy and multiple subpial transection (4%), lobe resection (8%), and lesionectomy (11%).

Among patients with 13 or more seizures per year, 27% reported referral to an epilepsy center. Most survey participants – 61% of patients and HCPs and 68% of caregivers – "reported a desire for a treatment map that tells patients to see an epileptologist/specialist as soon as they have symptoms," the researchers said.

"What we would like to think is that we are getting the whole scoop and the honest scoop" about seizure activity, Dr. Penovich said in an interview. "What this shows us is that that's probably not always true. Some health care providers understand that the patients do not tell them everything," but the degree of seizure underreporting may be surprising.

Dr. Penovich has seen this phenomenon in practice. In some cases, caregivers return to the office to explain that a patient did not report all of their seizures. Other patients may omit entire days of seizures in their diaries as an oversight. In addition, patients may not report seizures to avoid having a driver's license revoked. In some instances, clinicians may not take the time to discuss seizure activity in detail.

Having an accurate picture of seizure activity is an "important part of working with our patients, particularly when we are trying to get them to the point of being seizure free," said Dr. Penovich.

Failing a first or second AED indicates a greater likelihood that medication will not stop a patient's seizures, "but it does not mean that you will not be controlled," Dr. Penovich said. More medications, surgical options, and investigative treatments have become available. Still, AED trials should not prevent a timely referral to an epilepsy center. "You don't need to go through 10 or 15 before you get referred" to an epilepsy center, she said.

The STEP survey was conducted by Kantar Health on behalf of SK Life Science. Dr. Penovich has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities from SK Life Science, Neurelis, GW Pharmaceuticals, Engage Therapeutics, and UCB Pharma. A coauthor was employed by Kantar Health. Other coauthors disclosed compensation from SK Life Science and various pharmaceutical companies.

SOURCE: Penovich PE et al. AAN 2020, Abstract S59.007.

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