Community-onset pediatric status epilepticus: Barriers to care and outcomes in a real-world setting

Abstract

Objective: Status epilepticus (SE) is a neurological emergency in childhood, often leading to neuronal damage and long-term outcomes. The study aims to identify barriers in the pre-hospital and in-hospital management of community-onset pediatric SE and to evaluate the effectiveness of pediatric scores on outcomes prediction.

Methods: This monocentric observational retrospective cohort study included patients treated for community-onset pediatric SE in a tertiary care hospital between 2010 and 2021. Data were extracted following Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. Inclusion criteria were community-onset SE (according to the International League Against Epilepsy [ILAE] Task Force on SE Classification), admission to the pediatric emergency department (PED), age: 1 month to 18 years. Pre-hospital, in-hospital management and outcomes were analyzed. Pediatric scores for prediction of clinical worsening (Pediatric Early Warning Score - PEWS) and SE outcome (Status Epilepticus in Pediatric patients Severity Score - STEPSS; Pre-status Epilepticus PCPCS, background Electroencephalographic abnormalities, Drug refractoriness, Semiology and critical Sickness Score - PEDSS) were retrospectively assessed for their accuracy in predicting short-term and long-term outcomes.

Results: A total of 103 consecutive episodes of SE were included. Out-of-hospital rescue medications administration occurred in 54.4% of cases and was associated with higher SE resolution rate before PED admission (48.2% vs 27.6%, p = .033). Longer in-PED time to treatment was observed in case of delay to PED referral (r = 0.268, p = .048) or non-red triage labels (12 vs 5 min, p = 0.032), and was associated with longer in-PED duration of SE (r = 0.645, p < .001). Longer SE duration was observed in episodes leading to hospitalization compared to those discharged (50 vs 16 min, p < .001). In-PED electroencephalography (EEG) recordings were available in 39.8% of events. Predictive scores varied in accuracy, with PEWS ≥5 showing high sensitivity for intensive care unit (ICU) admission but low specificity. No patients died, 6.3% of SE was refractory.

Significance: Effective pre-hospital administration of rescue medications and prompt PED management are crucial to reduce SE duration and improve outcomes. Predictive scores can aid in assessment of the severity and prognosis of SE; their utility is still not defined. Identifying and addressing actionable care barriers in SE management pathways is essential to enhance patient outcomes in pediatric SE.

Keywords: childhood; management; outcomes; seizures; treatment.

FIGURE 1

Pediatric performance scale variation before and after status epilepticus. At discharge, no cognitive outcome deterioration was observed via the PCPCS, with one data point missing. One child briefly experienced a 1‐point decrease in the mRSC score (from 3 to 4), which normalized within a month. After 1 year, 7 of 77 available cases showed declines in PCPCS, whereas 1 of 88 had a drop in mRSC scores. mRSC, modified Rankin Scale for Children; PCPCS, Pediatric Cerebral Performance Category Scale; SE, status epilepticus; n/a, not available.

FIGURE 2

Accuracy of scores in predicting status epilepticus outcomes. (A) Intensive Care Unit (ICU) admission: The Pediatric Early Warning Score (PEWS) ≥5 had 100% sensitivity (SEN) and 69% specificity (SPE) in predicting ICU admission. Positive predictive value (PPV) was 24% and negative predictive value (NPV) was 100% Accuracy (ACC) = 72%; area under the curve (AUC) = 0.85. Pre‐status Epilepticus PCPCS, background Electroencephalographic abnormalities, Drug refractoriness, Semiology, and critical Sickness (PEDSS) score ≥3 had 60% SEN and 85% SPE in predicting ICU admission. PPV was 37% and NPV was 93%; ACC = 82%; AUC = 0.72. (B) Refractory status epilepticus: PEWSS ≥5 had 100% SEN and 65% SPE in predicting RSE. PPV was 8% and NPV was 100%. ACC = 66%; AUC = 0.83. SE in Pediatric patients Severity Score (STEPSS) >3 had 50% SEN and 79% SPE in predicting RSE. PPV was 9% and NPV was 97%; ACC = 78%; AUC = 0.65. (C) Pediatric Cerebral Performance Category Scale (PCPCS worsening at 1 year): PEWS ≥5 had 43% SEN and 64% SPE in predicting PCPCS worsening at 1 year. PPV was 10% and NPV was 92%; ACC = 62%; AUC = 0.53. PEDSS ≥3 had 20% SEN and 76% SPE in predicting PCPS worsening (≥1) at 1 year. PPV was 14% and NPV was 83%; ACC = 67%; AUC = 0.48. STEPSS >3 had 28% SEN and 80% SPE in predicting PCPS worsening (≥1) at 1 year with a 12% PPV and 93% NPV. ACC = 76%; AUC = 0.55. (D) modified Rankin Scale for Children (mRSC) worsening (≥1) at 1 year: PEDSS ≥3 had 100% SEN and 81% SPE in predicting mRSC worsening (≥1) at 1 year. PPV 14%; NPV 100%; ACC = 81%; AUC = 0.90. STEPSS >3 had 0% SENS and 82% SPE in predicting mRSC worsening (≥1) at 1 year. PPV 0%, NPV 99%. ACC = 82%; AUC = 0.41.

FIGURE 3

Barriers to care in pediatric status epilepticus management. The figure shows the main barriers to care that emerged in the study and the main influencing factors; arrows link those that showed direct correlation with each other and with short‐term outcomes (in orange). Possible interventions to overcome each of these are suggested in the green box.