RESUMO
A survey of 146 pediatric care providers (PCPs) revealed that 75.3% were unaware that children with epilepsy were at risk of death, specifically from sudden unexpected (or unexplained) death in epilepsy (SUDEP). PCPs assume that the treating neurologist discusses these risks. Increasing PCPs' knowledge of SUDEP will help address the care gap related to informing families about SUDEP.
Assuntos
Competência Clínica , Morte Súbita/etiologia , Epilepsia/complicações , Humanos , Profissionais de Enfermagem Pediátrica , Pediatras , Médicos de Família , Inquéritos e Questionários , Estados UnidosRESUMO
OBJECTIVE: Our aim was to describe the risk factors known to be related to sudden unexpected death in epilepsy (SUDEP) that can be extracted from patients that utilizes an online seizure diary tool (SeizureTracker™). METHOD: We conducted a descriptive analysis of SeizureTracker™ users across factors relevant to SUDEP risk. We also compared our app-using cohort to published SUDEP case-control studies. RESULTS: We report across seven risk factors from 30,813 users of SeizureTracker™ who had a median length of time using the app of 5.69 years (range from 1 month to 15 years). We found that they are at greater risk for SUDEP than groups from published studies (p < .00001) based on the risk factor of generalized tonic-clonic seizures. SIGNIFICANCE: We demonstrated that the population using the SeizureTracker™ tool can be a valuable population for expanding investigation of SUDEP risk factors and is a first step towards establishing a large sample with a method to ascertain data prospectively that might be critical to developing a SUDEP risk algorithm.
Assuntos
Epilepsia , Morte Súbita Inesperada na Epilepsia , Morte Súbita/epidemiologia , Morte Súbita/etiologia , Eletrônica , Epilepsia/complicações , Epilepsia/epidemiologia , Humanos , Convulsões/complicações , Morte Súbita Inesperada na Epilepsia/epidemiologiaRESUMO
The improved use of Electronic Health Record (EHR) Systems provides an opportunity to improve the overall efficiency and quality of care of patients with epilepsy. Tools and strategies that may be incorporated into the use of EHRs include utilizing patient generated data, clinical decision support systems and natural language processing systems. Standardization of data from EHR systems may lead to improvement in clinical research through the creation of data collections and multi-center collaborations. Challenges to collaborative use of EHR Systems across centers include costs and the diversity of EHR systems.