Socioeconomic Outcome and Quality of Life in Adults after Status Epilepticus: A Multicenter, Longitudinal, Matched Case–Control Analysis from Germany

Abstract

BackgroundThere is a lack of data concerning socioeconomic outcome and quality of life (QoL) in patients after status epilepticus (SE) in Germany.Patients and methodsAdult patients treated between 2011 and 2015 due to SE at the university hospitals in Frankfurt, Greifswald, and Marburg were asked to fill out a questionnaire regarding long-term outcome of at least 3 months after discharge. The SE cohort consisted of 25.9% patients with an acute symptomatic, 42% with a remote symptomatic and previous epilepsy, 22.2% with a new-onset remote symptomatic, and 9.9% with other or unknown etiology. A matched case–control analysis was applied for comparison with patients with drug refractory epilepsy and seizure remission, both not previously affected by SE.ResultsA total of 81 patients (mean age: 58.7 ± 18.0 years; 58% female) participated. A non-refractory course was present in 59.3%, while 27.2% had a refractory SE (RSE) and 13.6% had a superrefractory SE (SRSE). Before admission, a favorable modified Rankin Scale (mRS) of 0–3 was found in 82.7% (67/81), deteriorating to 38.3% (31/81) (p = 0.003) at discharge. The majority returned home [51.9% (42/81)], 32.1% entered a rehabilitation facility, while 12.3% were transferred to a nursing home and 3.7% to another hospital. The overall mRS at follow-up did not change; 61.8% (45/74) reached an mRS of 0–3. In RSE and SRSE, the proportion with a favorable mRS increased from 45.5% at discharge to 70% at follow-up, while QoL was comparable to a non-refractory SE course. Matched epilepsy controls in seizure remission were treated with a lower mean number of anticonvulsants (1.3 ± 0.7) compared to controls with drug refractory epilepsy (1.9 ± 0.8; p < 0.001) or SE (1.9 ± 1.1; p < 0.001). A major depression was found in 32.8% of patients with SE and in 36.8% of drug refractory epilepsy, but only in 20.3% of patients in seizure remission. QoL was reduced in all categories (QOLIE-31) in SE patients in comparison with patients in seizure remission, but was comparable to patients with drug refractory epilepsy.DiscussionPatients after SE show substantial impairments in their QoL and daily life activities. However, in the long term, patients with RSE and SRSE had a relatively favorable outcome comparable to that of patients with a non-refractory SE course. This underlines the need for efficient therapeutic options in SE.

Long‐term outcomes of status epilepticus: A critical assessment

“…Neuroprotective approaches are likely to improve outcome of patients with acute symptomatic causes, which seems to be one of the most important risk factors 20. Some studies have demonstrated that functional outcome and likely QoL may improve over time 15, 18, 22, 23. Promising research in animal models is in the process of identifying biomarkers that can be modulated to minimize long‐term functional impairment 89, 90.…”

“…However, population‐based studies comparing adults with childhood‐onset epilepsy with or without SE showed no association with educational attainment, employment status, and income 33. Patients after RSE may achieve an equivalent QoL as compared to patients after non‐RSE 18. However, patients in seizure remission present better QoL results as compared to patients with SE 18.…”

“…In 21 studies including adults, definitions were more variable, including 30‐minute seizure duration limits,7, 8, 9, 10, 11, 12, 13 and 5‐minute clinical seizure duration or more than two seizures without return to baseline between seizures 14, 15, 16, 17, 18, 19. One study also chose a 10‐minute clinical seizure duration cutoff limit 20.…”

Treatment of refractory and superrefractory status epilepticus with topiramate: A cohort study of 106 patients and a review of the literature

“…[16][17][18] The detailed evaluation of all SE patients is part of a study on SE outcomes; this study was registered at the German Clinical Trials Register (DRKS00008718) and was approved by both local ethics committees. Both hospitals offer a full range of neurological care services with expertise in epileptology and intensive care medicine.…”

Perampanel for treatment of status epilepticus in Austria, Finland, Germany, and Spain

“…Unfortunately, 31%-43% of patients with established SE will become refractory to first-line AEDs. 2,11 Both RSE and SRSE can cause long-term neurological disability and reduced quality of life compared with those in seizure remission, 2,11,14 highlighting the unmet need for novel and effective SE treatments. 7,12,13 SRSE is SE that has continued or recurred despite 24 hours of general anesthesia and has an estimatedmortalityrateof30%-50%.…”