ABSTRACT
There is higher prevalence of epilepsy and SUDEP in people with intellectual disability (PwID) compared to general population. Accurate seizure recording particularly at night can be challenging in PwID. Neuro Event Labs seizure monitoring (Nelli) uses high-quality video based artificial intelligence to detect and record possible nocturnal seizures. This study looks to evaluate the clinical utility and acceptability of Nelli in PwID and epilepsy. Family/carers of PwID and drug resistant epilepsy with suspicions of nocturnal seizures who had not tolerated routine or ambulatory EEGs were invited to evaluate Nelli. Relevant demographics and clinical characteristics were collected. Nelli's impact, it's facilitators, barriers and feedback quality was captured from patient and professional stakeholders. Quantitative and thematic analysis was undertaken. Fifteen PwID and epilepsy and four health professionals were involved. Nelli recorded 707 possible seizure events across the study cohort of which 247 were not heard or recognised by carers. Carers recorded 165 episodes of 'restless' or "seizure behaviour" which the Nelli did not deem to be seizures. There was 93% acceptability. Thematic analysis revealed three broad themes of device acceptability, result implementation and possible seizure recognition ability. Nelli allowed for improved communication and care planning in a hitherto difficult to investigate population.
ABSTRACT
BACKGROUND: Antipsychotic medications are used among 19%-58% of adults with intellectual disabilities to manage challenging behaviour against the NICE guideline recommendations. Studies show that it is possible to completely withdraw antipsychotics in about one third of adults with intellectual disabilities and a dose reduction of 50% or more in another third. METHOD: In Cornwall, over three years the present authors developed a structured pathway to withdraw antipsychotics among adults with intellectual disabilities which involved people with intellectual disabilities and their carers, GPs, community learning disability team members and pharmacists. RESULTS: The present authors managed to withdraw antipsychotics totally among 46.5% (33/71) and reduced over 50% of dosage in another 11.3% (8/71) of adults with intellectual disabilities. At three months follow-up no one required hospital admission or change in placement. CONCLUSION: It is possible to withdraw/reduce antipsychotics in a high proportion of adults with intellectual disabilities if a concerted effort is made involving all stakeholders from the outset.
