Reliability of patient self‐report of cognition, awareness, and consciousness during seizures

Abstract

Objective: Clinicians rely on patient self-report of impairment during seizures for decisions including driving eligibility. However, the reliability of patient reports on cognitive and behavioral functions during seizures remains unknown. Methods: We administered a daily questionnaire to epilepsy patients undergoing continuous video-EEG monitoring, asking about responsiveness, speech, memory, awareness, and consciousness during seizures in the preceding 24 hours. We also administered a questionnaire upon admission about responsiveness, speech, and awareness during seizures. Subjective questionnaire answers were compared with objective behavioral ratings on video review. Criteria for agreement were Cohen's kappa >0.60 and proportions of positive and negative agreement both >0.75. Results: We analyzed 86 epileptic seizures in 39 patients. Memory report on the daily questionnaire met criteria for agreement with video review (j = 0.674 for early, 0.743 for late recall). Subjective report of awareness also met agreement criteria with video ratings of memory (j = 0.673 early, 0.774 late). Concordance for speech was relatively good (j = 0.679) but did not meet agreement criteria, nor did responsiveness or consciousness. On the admission questionnaire, agreement criteria were met for subjective report of awareness versus video ratings of memory (j = 0.814 early, 0.806 late), but not for other comparisons. Interpretation: Patient self-report of memory or awareness showed the best concordance with objective memory impairment during seizures. Self-report of impairment in other categories was less reliable. These findings suggest that patient reports about impaired memory during seizures may be most reliable, and otherwise determining functional impairments should be based on objective observations.

Testing awareness in focal seizures: Clinical practice and interpretation of current guidelines

“…Outside of the EMU setting, it is rare for clinicians to witness patients' seizures and therefore, relying on reports by external witnesses or on patient self‐reports is vital to clinical care. Recent research indicates that self‐reports may agree with external observers for some seizure characteristics, especially memory ability during seizures 7,8 . On the other hand, patients often underreport the occurrence of seizures, likely also limiting their ability to report on seizure characteristics, 8,9 and many seizures are unwitnessed particularly in sleep.…”

“…Recent research indicates that self‐reports may agree with external observers for some seizure characteristics, especially memory ability during seizures. 7 , 8 On the other hand, patients often underreport the occurrence of seizures, likely also limiting their ability to report on seizure characteristics, 8 , 9 and many seizures are unwitnessed particularly in sleep. For seizure classification, ideally all information should be used from witnesses, self‐report, and direct observation from the EMU when available.…”

Evaluating consciousness and awareness during focal seizures: responsiveness testing versus recall testing

“…Although, as already discussed, recall of internal events cannot be objectively validated, such first‐person observations may still be valuable. Interestingly, recent work suggests that patients’ self‐reporting of their ability to remember events during seizures (or not) is often correct, as confirmed by external observers in both the outpatient and inpatient settings [2, 25]. On a related note, testing impairment of the self during seizures, such as agency, authorship, self‐awareness, and self‐oriented cognition may add another dimension to better understand ictal impairment of consciousness [26].…”

“…For example, patient and family outpatient reports of responsiveness and recall during seizures (including unobserved seizures) should be compared to objective data from the same patients using video/EEG. One recent study administered a questionnaire at the time of admission asking patients about their responsiveness during seizures at home and found that patient reports about responsiveness were unreliable compared to objective video/EEG assessment [2].…”

Consciousness alteration in focal epilepsy is related to loss of signal complexity and information processing

“…However, previous work in focal epilepsy has mainly focused on alteration of the level of awareness. In the new ILAE classification of seizure types, “consciousness” was thus replaced by “awareness “ 7 , which refers to the awareness of events occurring during a seizure 8 .…”