To examine characteristics of patients with epilepsy (PWE) with a seizure cluster in the 12 months preceding status epilepticus (SE).

Identification of PWE at increased risk of developing SE has remained elusive. We assessed the clinical features of PWE and seizure clusters prior to presenting with SE.

PWE who presented between 2015 and 2020 with SE were identified from a clinical coding database. The clinical characteristics of patients with a seizure cluster in the 12 months preceding SE were compared to those without a cluster.

Of 165 episodes (129 patients) of SE, 62 episodes (48 patients, 37%) had a seizure cluster in the 12 months preceding presentation. The median duration of onset from seizure cluster to status epilepticus was 11 weeks (range 0.14 – 51 weeks). Age and sex were similar in both groups, with no difference in the aetiology of epilepsy or SE or the proportion of patients with convulsive SE and non-convulsive SE.

A prior episode of SE was more frequent in the cluster group (44% cluster vs 15% no cluster, p=0.0001). Similarly, an ED presentation for seizures in the prior 12 months was more common in the cluster group (97% cluster vs 26% no cluster, p value <0.001). An anti-seizure medication (ASM) alteration over the 12 months prior to SE occurred more often in the cluster group (61% cluster vs 23% no cluster, p value <0.001).

Although PWE who have a cluster prior to SE share similar characteristics they are more likely to present to ED in the year prior to SE, providing an opportunity to intervene to prevent subsequent SE. Epilepsy patients with clusters should be regularly reviewed to ensure epilepsy treatment is optimised.