Abstracts

Rationale: Sudden Unexpected Death in Epilepsy (SUDEP) is a complication of epilepsy responsible for approximately 1 death per 1000 patients. Prior research demonstrates minimal SUDEP disclosure between providers and patients, although patients have consistently reported desire to know their risk. However, most of these studies has been conducted in Caucasian populations without specific attention to lower socioeconomic class, racially diverse patients. Thus, the purpose of this study is to determine patient and provider attitudes regarding SUDEP disclosure at a community health center serving minority patients.


Methods: This cross-sectional study utilized surveys distributed to patients with epilepsy (n=20), diabetes (n=20), no chronic disease (n=20) and providers (n=13). Online surveys were distributed to 13 providers whereas phone surveys were conducted for patients with epilepsy. In-person surveys were distributed to patients with diabetes and no chronic disease to serve as comparison groups. Surveys were available in both Spanish and English. Patient surveys consisted of demographic information and questions evaluating their current knowledge and preferences regarding disclosure.


Results: 20 patients with epilepsy, 20 patients with diabetes, 20 patients without chronic diseases, and 9 providers responded to the online or in-person surveys. Of the patients with epilepsy, 90% (n=18/20) were Hispanic which was not significantly different from the comparison groups. 45% (n=9/20) believed they had a higher rate of death due to epilepsy with only 3 patients having heard of SUDEP prior to the survey, and only 1 learning this from a physician (Table 1). All patients wanted to know everything there was to know about their condition, including a higher risk of unexpected death. Most patients (85%, n=17/20) believe everyone with epilepsy should be informed of SUDEP and this information should come from their provider (90%, n=18/20) (Table 1). Results were similar for both comparison groups, except patients with diabetes unanimously desired to know about a theoretical risk of death at the time of diagnosis (Table 2). Of the providers, 66.7% (n=6/9) never discuss SUDEP, and the remaining 33.3% (n= 3/9) discussing SUDEP rarely. The primary reason for not discussing SUDEP was not knowing enough about it (66.7%, n=5/9).


Conclusions: Almost all patients with epilepsy had no knowledge of SUDEP, yet desired to know this information within the first two visits. Providers in the primary care setting rarely discuss SUDEP, most often due to lack of knowledge. These results are very similar to those found in mainly white, higher socioeconomic populations and indicate that race should not be a barrier to SUDEP disclosure. These findings are significant to influence future practice in counseling patients of all ethnic and racial backgrounds about their risk of SUDEP, especially in the primary care setting with education of providers being the primary intervention.


Funding: There was no funding for the current study.