Abstracts

Rationale: SUDEP is the most common epilepsy-related cause of death in persons with epilepsy. Evidence supports that increased SUDEP awareness and education can be translated into significantly reduced rates of epilepsy-related deaths. However, there is a lack of consensus regarding how health care practitioners should address SUDEP with patients, and a lack of evidence regarding patient educational interventions. The purpose of this study was to describe various health care providers practices regarding discussion of SUDEP with their patients. Methods: Separate focus groups were conducted, each involving epileptologists (n=19), neurologists (n=16), or advanced practice nurses (n=8). The focus group moderator asked participants questions pertaining to reasons for and for not discussing SUDEP, and how they discuss SUDEP. Focus group data were analyzed via content analysis per each practitioner group, and comparisons were then made across groups. Data were organized via themes in order to answer the research questions.Results: Table 1 depicts final themes and definitions. Across all disciplines, reasons for discussing SUDEP included Practical Accountability, Moral Accountability, Proactivity, and Reactivity. For nurses only, an additional reason was Patient Advocacy. In terms of when not to discuss SUDEP, for all disciplines involved, and especially the physicians, the theme Not at First emerged. Additional themes that emerged for this question included, in the case of neurologists and epileptologists, Moral Accountability and Out of Options. Ways in which SUDEP is discussed included, in all groups, Discussion and Written Materials. In addition, prevalent in all groups was the finding that procedures for discussing SUDEP with patients and families need to be somewhat standardized, though the discussion should always be tailored to fit the patient's context. As well, more informative written materials should be developed. Conclusions: These results provide an initial view of the way in which various practitioners approach the discussion of SUDEP with patients and families. There were commonalities in the ways in which all three types of practitioners address this topic. Differences between the physician and advanced practice nurse groups were identified regarding reasons for discussing and not discussing SUDEP. These findings highlight the lack of standardization and consensus in how epilepsy practitioners should address this important topic, and can help inform the development of SUDEP-related educational interventions for patients with epilepsy, as well as their families.