Abstracts

Rationale: Epilepsy affects an estimated 0.5-1% of the population and the increased risk of mortality in epilepsy patients is well documented. Sudden Unexpected Death in Epilepsy (SUDEP) is the most common cause of epilepsy-related death and while rare in children and teens, SUDEP has been reported as early as age 8 months. There is a growing debate in the medical community over the discussion of SUDEP with epilepsy patients. The aim of this study is to determine the level of awareness of SUDEP among US physicians who primarily care for pediatric patients and to determine how often and with whom pediatric practitioners are discussing SUDEP in the US. Methods: A 21 question web-based survey was distributed to 32,120 US pediatricians, child neurologists, neurologists, and family physicians. Of those physicians emailed, only those who completed post-graduate training, whose practice included >10% pediatric patients, and who devoted >5% of time to patient care were invited to complete the survey. The survey invitation was sent twice and included questions on practice demographics, patient demographics, familiarity with SUDEP, frequency of discussing SUDEP, and conditions under which the practitioner discussed SUDEP. Statistical analysis of the data was performed using SPSS. Results: 1,599 physicians completed the survey (69.2% general pediatricians, 14.6% child neurologists, 3.1% developmental pediatricians, 1.6% family physicians, 1.3% neurologists). 48% of the physician sample was familiar with SUDEP. 22% of the sample cared for a patient who died of SUDEP during his/her career. 79.6% of respondents replied that they do not ever discuss SUDEP with their patients. The most common specific patient characteristics that prompted the practitioners to discuss SUDEP were intractable epilepsy (14.6%) and the presence of nocturnal seizures (6%). 12.8% stated that they discuss SUDEP when the patients become medically intractable and 6.5% report discussing SUDEP with the diagnosis of epilepsy. The most common reason for not discussing SUDEP with patients, reported by 60.3% of practitioners, was "I do not know enough about SUDEP to have this discussion". Our data showed no significant correlation between number of years in practice and knowledge of SUDEP (r=0.43, P=0.08). Our results did show that physicians who had experienced a patient death due to SUDEP were significantly more likely to discuss SUDEP with families of epilepsy patients (r=0.53, P<0.0001). Conclusions: This is the first study to examine how strictly pediatric providers discuss SUDEP in the US. Almost half of the physicians report no prior knowledge of SUDEP and the majority of physicians in our largely primary care based sample are not having the SUDEP discussion with families. Prior experience with SUDEP and treating patients with intractable epilepsy appear to increase physician likelihood of discussing SUDEP. Our results suggest that there needs to be a greater effort placed on disclosure of SUDEP to patients and their families as well as greater discussion and dissemination of information on SUDEP to pediatric medical care providers.