Referral odyssey plot to visualize causes of surgical delay in mesial temporal lobe epilepsy with hippocampal sclerosis

Kazutoshi Konomatsu; Yosuke Kakisaka; Makoto Ishida; Temma Soga; Kazushi Ukishiro; Shin-Ichiro Osawa; Kazutaka Jin; Masashi Aoki; Nobukazu Nakasato

doi:10.1016/j.yebeh.2023.109434

Referral odyssey plot to visualize causes of surgical delay in mesial temporal lobe epilepsy with hippocampal sclerosis

Epilepsy Behav. 2023 Oct:147:109434. doi: 10.1016/j.yebeh.2023.109434. Epub 2023 Sep 14.

Authors

Kazutoshi Konomatsu¹, Yosuke Kakisaka², Makoto Ishida³, Temma Soga¹, Kazushi Ukishiro³, Shin-Ichiro Osawa⁴, Kazutaka Jin³, Masashi Aoki⁵, Nobukazu Nakasato³

Affiliations

¹ Departments of Epileptology, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan; Departments of Neurology, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.
² Departments of Epileptology, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan. Electronic address: yosuke.kakisaka@epilepsy.med.tohoku.ac.jp.
³ Departments of Epileptology, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.
⁴ Departments of Neurosurgery, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.
⁵ Departments of Neurology, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.

PMID: 37716330
DOI: 10.1016/j.yebeh.2023.109434

Abstract

The "odyssey plot" was used to visualize referral delays in epilepsy surgery. Participants were 36 patients (19 males; 13-67 years, median 27 years) with mesial temporal lobe epilepsy with hippocampal sclerosis (HS) who underwent resection surgery. The "referral odyssey plot" included five clinical episodes: seizure onset (T1), first visits to a non-epileptologist (T2) and to an epileptologist (T3), first admission to our epilepsy monitoring unit (EMU) (T4), and resection surgery (T5). For each patient, we identified the first seizure type: the physician who first diagnosed focal aware seizure (FAS), focal impaired awareness seizure (FIAS), focal to bilateral tonic-clonic seizure (FBTCS), and radiologically suspected HS. Within the overall delay (T1-T5, median 18 years; interquartile range [IQR] 14), non-epileptologist's delay (T2-T3, 11.5 years; IQR 12.25) was far (p < 0.0001) longer than patient's (T1-T2, 0 year; IQR 2.25), epileptologist's (T3-T4, 1 year; IQR 4), or after-EMU delay (T4-T5, 1 year; IQR 1). FAS onset cases had significantly longer T1-T2 (N = 5, median 7 years; IQR 6) than FIAS (N = 22, 0 year; IQR 1, p < 0.005) or FBTCS onset cases (N = 9, 0 year; IQR 0, p < 0.001). FAS was correctly diagnosed first by non-epileptologists in 17.9%, by out-patient epileptologists in 35.7%, and at the EMU in 46.4%. FIAS was correctly diagnosed first by non-epileptologists in 94.4% and by out-patient epileptologists in 5.6%. Non-epileptologists diagnosed FBTCS in all cases. HS was diagnosed by non-epileptologists in 13.9%, by out-patient epileptologists in 47.2%, and at the EMU in 38.9%. Early referral to epileptologists is most critical for early surgery. Early utilization of the EMU is highly recommended because FAS is often overlooked by outpatient epileptologists. The odyssey plot will be useful to improve the healthcare system for other types of epilepsy.

Keywords: Diagnostic odyssey plot; Epilepsy surgery; Epileptologists; Non-epileptologists; Referral delay.