Abstracts

Rationale: For over a decade the Scottish Intercollegiate Guidelines on Epilepsy have stated the information should be given about SUDEP. This was re-interated at the conclusion of a Fatal Accident Inquiry (FAI) in 2011 into the deaths of two young women when the Sheriff handed down the following determination. “The vast majority of patients with epilepsy should be advised of the risk of sudden unexpected death (SUDEP) on first diagnosis of it or if there are exceptional circumstances for delaying immediate provision of information, then within a short time thereafter” We examined the first 500 patients on our data base to determine what effect the SIGN guidelines and the FAI ruling had on our practice.Methods: Data from March 2013 to August 2014 on our data base was examined. The data base captures the patients of the two epileptologists( Dr S Duncan and Dr C. Derry) in the Department of Clinical Neurosciences. In particular it captures the epilepsy syndrome and the patients community health index(CHI) number. Everyone who uses the NHS in Scotland has such a number and it can be used to link data across various platforms, including each persons electronic patient record(EPR)Results: 513 patients with epilepsy were registered in the specified time . These comprised newly diagnosed cases, established cases previously seen in epilepsy clinics, and patients referred from colleagues in Edinburgh. Forty patients came from outside Lothian for tertiary opinions(Table 1). One hundred and ninety-eight patients had been told about SUDEP (38.6%). Those told were significantly younger than those not informed, which reflected the fact that those developing epilepsy in early life were more likely to be informed about SUDEP. The number of current and previous anti-epileptic drugs(AEDS), the presence of epileptogenic EEG or MRI abnormalities, and social class had no effect on disclosure status(Table 2). Patients with GTCS were more likely to be informed about SUDEP. Clear reasons for not informing patients about SUDEP were available in 164 patients. The mean time from first contact with the epilepsy service to SUDEP disclosure was 2 years. Those first seen in the service after 2012 were more likely to be informed than those first seen before that dateConclusions: A non binding recommendation by a lower court appears to have had more effect on practice than the SIGN guidelines. Those with early onset epilepsy were more likely to know about SUDEP because of the paediaticians policy in Edinburgh of informing their teenage pateints about it. Worryingly markers for drug resistant or potentially drug resistant epilepsy did not seem to prompt clinicians to discuss SUDEP in this cohort. Mean time of two years between first contact and disclosure reflects the fact that if patients did not become seizure free consultations were devoted to AED treatments and psychosocial effects of epilepsy. This suggests that SUDEP and ways of preventing it should be discussed t the first or second visit to the clinic. Recent work done by our group has shown patients favour early and frank disclosure.