Abstracts

Rationale: Sudden unexpected death in epilepsy (SUDEP) is estimated to account for around 600 deaths in the United Kingdom. Guidelines advise that information regarding SUDEP should be given to all epilepsy patients . Despite this there is evidence that clinicians are coy about discussing SUDEP for fear of aggravating feelings of anxiety and depression . A recent qualitative study, however, found epilepsy patients did not report long lived feelings of anxiety with regards to SUDEP disclosure. Developing our knowledge on these issues will help to guide clinician judgment on SUDEP disclosure.Methods: Patients within six months of diagnosis of epilepsy who were able to give informed consent and who did not know about SUDEP were approached. Before SUDEP disclosure they completed the BDI II(Beck Depression Inventory), Hospital Anxiety and Depression Scale(HADS), General Health Questionnaire 28 (GHQ 28) the WHO-Qol Bref quality of life inventory and the Impact of Epilepsy scale(IPES) Participants were then provided with the standard information that all epilepsy patients are given during their first meeting with the epilepsy nurse. Participants were then asked whether they would like to receive information about SUDEP. Those electing to receive information were given it in a standard fashion and a leaflet prepared by a leading UK epilepsy charity provided with the patient asked to read it. One week after disclosure participants were sent the same questionnaires that they had completed during their initial consultation. If the participant had agreed to receive information about SUDEP they also received a SUDEP Survey questionnaire seeking their views about the information they were provided and if they chose not to receive the information they were sent a questionnaire seeking their views on why they did not want to receive information about SUDEP. Three months after their initial appointment this process was repeatedResults: Two participants were excluded after one scored in the ‘Severe Depression’ range on the Beck Depression Inventory and the other scored in the ‘Moderate Depression’ range during their initial consultation. The final data set comprised a total of 24 participants, 13 female (54%) and 11 male (46%) with a mean age of 42.63 years (Age range: 19-72 years). 6 patients declined SUDEP information. For those who chose information about SUDEP there was no significant difference between base line scores and those at 1 week and three months(Table 1) in particular there was no evidence of an increase in anxiety or depression. All patients who had elected to receive SUDEP information were glad they had done so, and felt information should be given between 3 and 6 months of diagnosis(Figure 1)Conclusions: This is a small study,so results must be approached with caution, but our data suggests that the majority of people want information about SUDEP and are not adversely affected by it. This reflects the findings of a qualative study recently completed by our group. Larger studies are required.