Abstracts

Rationale: Aim Aim our study was to understand the range of adult patients' views on whether and how to discuss the issue of SUDEP with patients with epilepsy, and to clarify the optimal timing and formulation of the information. Methods: In this qualitative descriptive study, a purposeful sample of patients diagnosed to have epilepsy by a neurologist were recruited through the adult neurology clinic and a community epilepsy agency. We conducted in-depth 1:1 telephone interviews, and a single focus group interview using a semi-structured interview guide. Interviews were audiotaped and transcribed verbatim. Interview data were coded and synthesized using directed content analysis. Results: 23 patients (7 males: 16 females) aged 18-65 years participated in the study. Nineteen participants completed a 1:1 interview; four participants shared their experiences in a focus group. 21 patients had epilepsy for more than 1 year and two patients were diagnosed within the previous 12 months. 13 patients had not heard about SUDEP before being invited to the study. Whether: 21 participants (91%) wanted all patients with epilepsy to be informed about SUDEP, while two had no clear answer. Most opined awareness would allow patients/caregivers to better prepare themselves (14/23), however a few mentioned the information could add extra emotional stress and worry (6/23). When: The majority (15/23) preferred to hear about SUDEP at the time of diagnosis while 30% (7/23) preferred the discussion during the follow up visit. Only four wanted to hear about SUDEP at both the first and follow up visit. What: There were differing opinions on the content of SUDEP discussions (cause-1, risk-9, full/general information-6, prevention-2, sources for more information-1, support group contact information-1, personal relevance-1) How: All 23 participants preferred hearing about SUDEP from a physician; primarily a neurologist who is an expert in this field. 13 suggested the presence of a nurse or social worker for extra support. Presence of a close relative was preferred by 19 at the time of SUDEP discussion. The preferred method of discussion was ‘face to face' for all participants except one. 61% (14/23) requested supplementary information pamphlets. Effect of SUDEP knowledge: 61% (14/23) did not think their life changed in any way after knowing about SUDEP, but many had learnt about SUDEP only when they were invited to participate in the study. 22% (5/23) mentioned they would be more cautious after knowing about SUDEP. Conclusions: Most patients (>90%) wanted to hear about SUDEP from their neurologist face to face, preferably at the time of diagnosis of epilepsy. This is consistent with the results of our previous study¹ on parents of children with epilepsy. These results will be useful in creating practise guidelines on SUDEP counseling. 1. RamachandranNair R et al., SUDEP: What do parents want to know. Epilepsy Behav. 2013; 29:560-4.