Evaluation of absences and myoclonic seizures in adults with genetic (idiopathic) generalized epilepsy: a comparison between self‐evaluation and objective evaluation based on home video‐EEG telemetry

Abstract

Objective. People with focal epilepsies are known to under-document their seizures, but there is no data on self-documentation in adults with genetic (idiopathic) generalized epilepsy (GGE/IGE). We assessed the accuracy of selfevaluation of typical absences (TA) or myoclonic seizures (MS) in adults with IGE based on home video-EEG telemetry (HVET). Methods. Patients' own estimates were compared to the objective count of definite TA and MS, performed visually. We considered definite TA as generalized spike-wave discharges (GSWD) that met any of the following criteria: 1) coinciding with clear behavioural arrest on video, 2) followed after a few seconds by positive indication that an absence occurred, or 3) in the absence of video, consistently coinciding with clear motor arrest, as evidenced by interruption of continuous muscle activity. For each patient, we also classified probable TA as GSWDs that were longer than those corresponding to the shortest definite TA on HVET or based on the most recent sleep-deprived EEG (SDEEG). Results. From the first 300 consecutive adults who had HVET, 24 had IGE with TA and / or MS; 23 were women. Only one patient had newly diagnosed IGE. Erroneous self-assessment of TA and MS was noted in 16/24 patients (66.7%). Seizures were overestimated in nine (37.5%) and underestimated in seven (29.2%). Only one patient (4.2%) documented all her TA and MS without falsepositive estimates. Overestimation (but not underestimation) of TA on HVET could be predicted when patients reported daily or multiple weekly TA and a recent SDEEG was either normal or contained only subclinical GSWD (p=0.0095). Significance. Under-and over-self-documentation of TA and MS occurred in two thirds of adults with GGE/IGE, with substantial impact on their outpatient management and treatment. Diagnostic HVET is a useful tool for the detection of erroneous self-evaluation in these patients.

Are The Seizures Under Control or Unnoticed? Electroclinical Evaluation of Epilepsy with Eyelid Myoclonia

“…Mean age at the nal EEG recordings was 14.8±3.7 years (7.5-23). Mean seizure onset age was 7.3±4 years (2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15). A total of 106 EEGs were analyzed with a mean of 5±1.9 EEGs (2-9) per case.…”

“…This emphasizes how EM was still underrecognised by the patients or their parents even after the diagnosis of E-EM. This phenomenon of under and over-reporting of seizures is recognized both in focal and generalized seizures [15,16]. Considering the nature of the seizures in E-EM, it is highly plausible that patients and caregivers of these patients would suffer from such erroneous reporting and fail to recognize ongoing seizures.…”

How accurately do adult patients report their absence seizures?

“…However, we were concerned that there was an even higher rate of misreporting in adults with typical absence seizures (AS), either through under-reporting (having AS but not reporting them) or over-reporting (reporting AS without associated EEG correlate). Under-reporting by parents of children with absence seizures has been described previously 7,8 and more recently under-and over-reporting of absences and myoclonus in adults using home VET has been reported 8 , but, in that study, absence seizures during runs of spike-wave were defined using behavioral or EEG criteria due to problems inherent to home VET. Here, we used both outpatient ambulatory EEG (aEEG) and inpatient VET to determine overreporting but only inpatient VET to determine under-reporting of behaviorally defined absence seizures.…”

“…been described previously, 7,8 and more recently, under-and over-reporting of absences and myoclonus in adults using home VET has been reported, 8 but, in that study, absence seizures during runs of spike-wave were defined using behavioral or EEG criteria due to problems inherent to home VET. Here, we used both outpatient ambulatory EEG (aEEG) and inpatient VET to determine over-reporting but only inpatient VET to determine under-reporting of behaviorally defined absence seizures.…”

Automated detection of absence seizures using a wearable electroencephalographic device: a phase 3 validation study and feasibility of automated behavioral testing

“…[2][3][4] Moreover, inaccurate reporting of absence seizures comprised both under-and overreporting; a recently published study found inaccurate self-reporting in more than two thirds of patients with absence seizures, 37.5% overreporting and 29.2% underreporting. 5 There is need for an objective estimation of absence seizure frequency. However, the use of gold standard inhospital video-EEG is resource demanding, and access to it is limited.…”