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.

Our research highlights the interactional contingencies of a hitherto neglected three-way clinical relationship comprising parent-proxy, an adult at risk of lacking decision-making capacity, and a treating clinician. This is a relationship, our findings suggest, where little importance is attached to either patient consent, or involvement in treatment decisions.

BackgroundIntellectual disability (ID) is relatively common in people with epilepsy, with prevalence estimated to be around 25%. Surprisingly, given this relatively high frequency, along with higher rates of refractory epilepsy than in those without ID, little is known about outcomes of different management approaches/clinical services treating epilepsy in adults with ID—we investigate this area.Materials & methodsWe undertook a naturalistic observational cohort study measuring outcomes in n = 91 adults with ID over a 7-month period (recruited within the period March 2008 to April 2010). Participants were receiving treatment for refractory epilepsy (primarily) in one of two clinical service settings: community ID teams (CIDTs) or hospital Neurology services.ResultsThe pattern of comorbidities appeared important in predicting clinical service, with Neurologists managing the epilepsy of relatively more of those with neurological comorbidities whilst CIDTs managed the epilepsy of relatively more of those with psychiatric comorbidities. Epilepsy-related outcomes, as measured by the Glasgow Epilepsy Outcome Scale 35 (GEOS-35) and the Epilepsy and Learning Disabilities Quality of Life Scale (ELDQoL) did not differ significantly between Neurology services and CIDTs.DiscussionIn the context of this study, the absence of evidence for differences in epilepsy-related outcomes amongst adults with ID and refractory epilepsy between mainstream neurology and specialist ID clinical services is considered. Determining the selection of the service managing the epilepsy of adults with an ID on the basis of the skill sets also required to treat associated comorbidities may hence be a reasonable heuristic.

Our findings support limited evidence from the literature of increased epilepsy costs in people with ID. Patterns of expenditure suggest clinical variation in the treatment of epilepsy according to the severity of ID, particularly in the absence of management by a consultant neurologist.