Abstracts

Rationale: Sudden unexpected death in epilepsy (SUDEP) is the unexplained death of a person with epilepsy who was otherwise healthy and is a leading cause of death in people with epilepsy. Epilepsy is reported in approximately 85% of individuals with tuberous sclerosis complex (TSC), but whether the TSC community is adequately informed about the risks of SUDEP is unknown. The purpose of this study was to develop an understanding of TSC patient-provider conversations surrounding SUDEP and whether there are differences between adult and pediatric individuals with respect to the perceived importance and understanding of SUDEP.

Methods: Electronic surveys were designed to gather quality improvement data on SUDEP education in the TSC community and healthcare providers, distrubuted from October 2023 - January 2024. Community responses included adults with TSC, and caregivers of children or dependent adults with TSC. Outreach for responses was conducted through email blasts, social media, and flyers at events. Demographic questions included race, age, and gender; SUDEP questions addressed general understanding, timing of discussions, and perceived emotions.
At survey closure, data was exported to SPSS. Descriptive analyses examined respondent demographics, and appropriate statistical analyses were conducted to assess differences between specific demographics. Independent t-tests compared SUDEP experience questions between two age groups: individuals younger than 19 and those 19 or older.

Results: Age was assessed in two groups: individuals younger than 19 and those 19 or older. 61.5% of respondents (self or caregiver) were younger than 19, and 38.5% were 19 or older. Age at TSC diagnosis showed that 93.4% were diagnosed prior to turning 19. Additionally, 72.4% had heard about SUDEP before taking the survey, while 27.6% had not. Of those who had previously heard about SUDEP, only 17.2% first heard from a healthcare provider, with patient advocacy groups (PAG) being the most common source (34.8%).
Individuals/caregivers with TSC younger than 19 were significantly more likely to have previously heard about SUDEP than those older than 19 (68.5%, p< 0.001). Whether individuals had previously heard about SUDEP was not different between those diagnosed before or after the age of 19 (p=0.52). Interestingly, individuals/caregivers younger than 19 were more likely to think about SUDEP at least weekly or more often (81.4%, p< 0.001). Finally, individuals younger than 19 were significantly more likely than those 19 or older to be educated on other seizure safety risks from their providers (52.0%, p< 0.001).