Abstracts

Rationale: Sudden unexplained death in epilepsy (SUDEP) occurs rarely in children but can be a serious concern for families of children with epilepsy. Child neurologists have different practices regarding SUDEP. We surveyed one large group to define the range of practice, knowledge, and comfort with SUDEP. Methods: A previously developed survey to assess neurologists' practice, knowledge, and comfort with SUDEP was adapted and sent to 27 board-certified child neurologists at Children's National Medical Center; 22 were completed. Descriptive statistics were then calculated. Results: 10/22 (45%) finished training within prior 5 years. 11/22 (50%) see between 21 and 50 patients with epilepsy per month, and 6 (24%) see less than 10 per month. The majority of respondents had a patient die of SUDEP: 10 (45%) with 0 cases; 5 (23%) with 1 case; 4 (18%) with 2 cases; 2 (9%) with 3 cases, and one (5%) with more than 5 cases. Only two clinical factors associated with an increased risk of SUDEP were correctly identified by a majority of respondents: treatment with three or more antiepileptic drugs, and lack of antiepileptic drug therapy. 4/22 (18%) answered that they discuss SUDEP with a majority of their patients; 10 (45%) discuss it with less than 10% of their patients. For discussion timing, 8/22 (33%) engage when they consider a patient to be high risk; 7 (33%) if a patient asks; 3 (14%) at the time of diagnosis; 3 (14%) for other reasons. Respondents believe that families typically respond to a discussion of SUDEP with relief (4), apprehension (17), indifference (2), distress (9), anxiety (13), and depression (0). Respondents identified the following reasons why they do not routinely discuss SUDEP: patient at minimal or low risk (15), SUDEP being so rare that the risks of discussion outweigh the benefits (6), lack of sufficient personal knowledge of SUDEP (6), insufficient research-based knowledge about SUDEP (5), yet to establish a trusting relationship with the patient (5), no proven way to prevent SUDEP (4), lack of time during an office visit (4), and possible negative effect on quality of life or mood (2). When asked if knowledge of SUDEP will improve medication compliance, 2 respondents (9%) answered "probably not", whereas 7 (32%) answered "probably so" or "definitely so". When asked which tools would help them educate patients and families about SUDEP, respondents answered: brochures/pamphlets (18), websites (16), support groups for families (13), guide for health care professionals about the medico-legal issues surrounding the discussion of SUDEP (9), newsletters with the latest research in SUDEP (8), training sessions/webinars (7), and none (2). Conclusions: Within a single institution there is a varied range of experience and practice concerning SUDEP even though families state that they wish they knew about the risks of morbidity and mortality. Barriers of knowledge and practice can contribute to infrequent discussions.