Abstracts

Rationale: A major reason for physicians not discussing SUDEP is fear of causing negative emotions and anxiety in their patients. Objective of this study was to understand the impact of knowledge about SUDEP in adult patients & primary caregivers of patients with epilepsy Methods: The principles of fundamental qualitative description was used 1. Patients ( >18 years) with epilepsy, or primary caregivers of patients with epilepsy 2. Participants aware of SUDEP at least 12 months before interview. 1 on 1 telephone interview using a semi-structured interview guide was used to explore the impact of this awareness on multiple aspects of the participant’s life. Principles of content analysis was used to code & categorize the interview data. Results: A total of 27  interviews were conducted with 13 caregivers (10 female caregivers and 3 male caregivers of children with epilepsy and 14 adult patients {8  females (mean age, 35.5 years, range 22-50 years) and 6 males (mean age, 39.3 years, range 30-46)}with epilepsy. Initial reactions to finding out about SUDEP can be described as emotional, with caregivers and patients describing feelings such as shock, horror & “overwhelming sadness.” However, when asked if, given another chance, they would still have liked to receive the knowledge. Impacts that followed the acquisition of SUDEP information: It was often difficult to distinguish what was the result of epilepsy in general versus specifically due to knowledge of SUDEP. When participants were describing impacts and would be pressed to differentiate, they more often said the impact was a result of epilepsy or some combination of epilepsy plus the knowledge of SUDEP. Impacts of SUDEP knowledge were more prevalent among caregivers than adult patients. Caregivers described specific impacts around increased supervision vigilance (particularly during sleep) – e.g. impacts on marital relations (not sleeping in same bed, little time alone together), job opportunities (e.g., want to be with child), and social participation (e.g., won’t leave home in evenings). Patients described very few impacts of SUDEP knowledge on their lives and rarely named it as a main source of concern when it comes to their epilepsy (more patients were worried about seizure control, maintenance of good seizure control, and related comorbidities). Some people thought about SUDEP frequently (e.g., daily, nightly), while others thought about it very rarely (e.g., monthly or less).  For those who thought about it frequently, it was usually because it was tied to a trigger (e.g., evening/nighttime). Seizures were most commonly cited as a trigger to thinking about SUDEP. Caregivers and patients described benefits to knowing about SUDEP that far outweighed drawbacks they identified. The most salient benefit was the notion that ‘knowledge is power.’ Among patients, there was also an indication that by having the knowledge of SUDEP, they would understand better the reasons to adhere to medications and adopt healthy lifestyles (e.g., sleep, nutrition, abstinence of drugs/alcohol etc.). All caregivers and patients agreed that it would be important to provide support to patients and families once they receive the knowledge of SUDEP. Several mentioned counselling or referral to a person (e.g., nurse) or place (e.g., epilepsy resource centre) where more questions could be asked/answered. Conclusions: Impact of knowledge about SUDEP was greater in caregivers than in adult patients. Over all negative impact was minimal. Patients were more concerned about epilepsy in general than specifically about SUDEP. These findings will give healthcare providers more confidence in discussing SUDEP risk with patients. Funding: Supported by Grant from SudepAware