Abstracts

Rationale: Sudden Unexpected Death in Epilepsy (SUDEP) occurs in 1 in every 1000 persons with epilepsy with peak incidence in young adults. This study aims to address a major concern of neurologists the effect of SUDEP disclosure. Methods: Consecutive young adults aged 16 -33 years, with a secure diagnosis of epilepsy, Hospital Anxiety and Depression Scale (HADS) score <11 (to exclude those with substantial depressive/anxiety features), and who had been previously told by their medical team about SUDEP were invited to the study. Semi structured interviews were carried out in patients homes. Interviews were recorded and transcribed for analysis on Nvivo. The study was approved by the South East Scotland Research Ethics Committee. Results: 22 subjects (12 female; mean age 22, range 18-29 years) were enrolled. 10 (45%, 95%CI 27-65%) reported initial feelings of fear and anxiety after disclosure, which in the majority appeared to settle with no long-term distress. One expressed anger at not being told at time of diagnosis. The remainder were untroubled by disclosure, although one reported subsequent anxiety when he suspected he had had a nocturnal seizure. Ten individuals (45%, 95%CI 27-65%) thought their risk of SUDEP was low, the rest were not able to articulate their risk. Of 8 with repeated nocturnal GTCS, 2 believed their risk was low, 5 did not know, and one believed SUDEP was due to drinking alcohol. 17 (77%, 95% CI 57-90%) thought disclosure important. 10 of these (59%, 95%CI 36-78%) highlighted the importance of clinician judgment and family involvement on timing, especially when patients were anxious, depressed or had learning difficulties. 14/22 (64%, 95% CI43-80%) thought it should not be done immediately at diagnosis. Of these most suggested it should be soon after diagnosis. 3/22 (14%, 95%CI 5-33%) personally favoured disclosure at diagnosis, but did not think this was best for the general epilepsy population. The majority were fatalistic about their chances of dying of SUDEP, with only 7 (32%, 95%CI 16-53%) thinking SUDEP preventable. Although most participants considered they knew little about SUDEP few researched it after disclosure. Reasons offered for not seeking further information were lack of anxiety, suppression of further thoughts about SUDEP, fatalism, satisfaction with information received in clinic. Six of the 22 (27%, 95% 13-48%) reported changing their behaviour; one stopped drinking alcohol and 5 improved medication compliance. The influence of clinical and demographic factors is being investigated and will be presented. Conclusions: Anxiety provoked by disclosure is not long lasting in most patients. Most want information about SUDEP, but thought diagnosis was not the best time for it to be given, saying it should be soon after. A substantial number think clinician judgement on timing is needed. Most patients are fatalistic about their SUDEP risk and do not think it preventable. This may explain why only a minority reported making changes in their behavior or compliance after being told about SUDEP