Clinical services for adults with an intellectual disability and epilepsy: A comparison of management alternatives.

BACKGROUND: Intellectual 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 & METHODS: We 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. RESULTS: The 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. DISCUSSION: In 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.

Factors influencing the costs of epilepsy in adults with an intellectual disability.

PURPOSE: Despite the common occurrence of intellectual disability (ID) in people with epilepsy, most studies of the cost of epilepsy have focussed primarily or exclusively on people without ID. This paper estimates the costs of supporting people with epilepsy and ID. METHODS: Prospective resource use and outcome data were collected on 91 participants from the east of England for seven months. Multivariate analysis was used to investigate the relationship between costs and patient and healthcare provider characteristics. RESULTS: Mean health care costs relating to epilepsy or ID were £2800 (3500 Euros, 5200 USD) p.a. Modelling suggests costs are lower for patients with more severe ID (p=0.014); and higher for patients managed by a consultant neurologist (p=0.037). DISCUSSION: 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.