Sudden Death in Epilepsy: Knowledge among Pediatric Providers

Discussing sudden unexpected death in epilepsy with children and young people with epilepsy and their parents/carers: A mixed methods systematic review

“…One study [9] was low quality, 5 were moderate [23][24][25][26][27] and 5 high quality [10,[28][29][30][31] according to cut-off scores determined by the review team a-priori.…”

“…The 11 studies originated from Europe [10,30], the United Kingdom [9,24,25,27], North America [23,26,29,31] and Malaysia [28] ( Table 1). The quantitative studies employed surveys [9,23,24,28,10] or structured interviews [29] and the qualitative studies focus groups and interviews [25][26][27]with one study reporting data from an open survey question [30]. The narrative article reported the views of two bereaved fathers [31].…”

“…The narrative article reported the views of two bereaved fathers [31]. Studies explored the views of healthcare professionals' [10,[23][24]30], CYPwE [25,27], family members of CYPwE [28], or bereaved families' [26,29,31], with one study [9] including both parents and healthcare professionals. Sample sizes ranged from 2 [31] to 161 [10], with the qualitative studies generally having smaller samples.…”

“…Information on SUDEP should be delivered face-to-face, with supporting written information, by a suitably knowledgeable healthcare professional whom the caregiver/CYPwE feels comfortable with, at an appropriate time at or close to diagnosis. Twenty-five findings from 9 studies [9,[23][24][25][26][27][28][30][31] formed the 3 categories (categories 3-5, Table 2) that comprised integrated finding 2. This finding identified that information on SUDEP should ideally be delivered face-to-face, with appropriate written information to reinforce the discussion, and that the discussion should happen at or close to the time of a diagnosis of epilepsy being made.…”

“…Regarding who should be present, the findings revealed that an epilepsy specialist should provide information on SUDEP. Definition of specialist varied across the studies with pediatric neurologist [26], "doctor" [31], and nurse [25] being named in some studies, while others just referred to "specialists" [23][24]. There was recognition in in one US survey [24] that primary care providers lacked the relevant knowledge for discussing SUDEP, with 79% citing lack of knowledge as the reason they did not discuss SUDEP, stating that they expected the neurologist to conduct this role.…”