How is epilepsy treated in people with a learning disability? A retrospective observational study of 183 individuals

Epilepsy in those with learning disability (LD) is currently managed by various health agencies with no obvious criteria for selecting particular care pathways and limited evidence-based descriptions of optimal treatment. The aim of this study was to examine relationships between management strategies and clinical outcomes in a community-based cohort of individuals with epilepsy and LD. The results may inform epilepsy management directly and contribute to an evidence base to support development of formal clinical trials. An attempt was made to recruit all individuals with epilepsy and LD known to community LD health services in one geographic area. However, those with profound LD were under-represented in the final sample. Information relating to the epilepsy, the severity of the LD, comorbidities and epilepsy management were obtained retrospectively both from the clinical notes and from interviews with carers and clinicians. We recruited 183 individuals of whom 33% had no reported seizures in the previous three months whilst 12% recorded more than 20 seizures per month. 73 individuals were receiving monotherapy, 66 were treated with two AEDs and 42 were prescribed three or more AEDs at the time of the study. In those taking monotherapy, there was no difference in the mean monthly seizure frequency between groups taking different AEDs. Similarly, for those prescribed two AEDS, no particular combination was associated with significantly lower seizure frequency. One third of the sample was receiving epilepsy management from hospital neurology services but no criteria determining choice of treatment pathway were identified. The findings suggest that more research needs to be carried out to identify both optimal care pathways and AED strategies.