Keeping patients with epilepsy safe: a surmountable challenge?

Abstract

This quality improvement project was inspired as an answer to a problem that intellectual disability teams have been struggling to manage whilst caring for people with epilepsy (PWE). The issue was that despite guidance to discuss the possibility of sudden unexpected death in epilepsy (SUDEP) be discussed with a newly diagnosed PWE this is rarely done. Additionally when, how, and what to discuss about SUDEP and reduce its risk is arbitrary, non-person centred, and with no structured evidence.Prior to initiating changes a discussion of SUDEP was recorded in just 10% of PWE. We introduced a check-list to help identify risk factors for SUDEP. We then modified the check-list, and then used it via telehealth, a way of contacting patients and their carers over the phone using the check-list approach. Following interventions, discussions of SUDEP are now recorded in 80% of PWE. Feedback from patients, carers and primary and secondary care professionals has been positive.We are now developing an app so that patients and carers can monitor their own risk factors, thus empowering them and increasing their knowledge and awareness of SUDEP.

Evaluating risk to people with epilepsy during the COVID-19 pandemic: Preliminary findings from the COV-E study

“…Rates of seizure-related deaths and SUDEP correlate with increased seizure frequency and insufficient engagement with clinicians [28] , [20] , [21] , [22] , [23] , [40] , [41] . Without appropriate medical attention, indicators that point to an increased likelihood of premature mortality may not be identified, restricting the ability to intervene [28] .…”

Discussing sudden unexpected death in epilepsy with children and young people with epilepsy and their parents/carers: A mixed methods systematic review

“…The findings recommend that SUDEP information includes prevalence, risk factors, and risk reduction methods. Although not specific to CYPwE, the SUDEP and seizure safety checklist developed by Shankar et al has been found to encourage healthcare professionals to discuss SUDEP with their patients [35]. It takes approximately 10-minutes to complete [36] and allows a risk assessment to be conducted, providing an individualised SUDEP risk rating which can be used to begin discussions about SUDEP and to provide a tailored risk reduction plan involving lifestyle modifications such as medication compliance and nighttime surveillance [37].…”

Steps to prevent SUDEP: the validity of risk factors in the SUDEP and seizure safety checklist: a case control study

“…It was found that 17 factors remained well associated with SUDEP and are directly relevant for people living with epilepsy. These 17 factors forms the background of the Seizure and SUDEP safety checklist, a 10 minute risk assessment tool used in epilepsy clinics across UK and the selfmonitoring of epilepsy risk mobile app EpSMon 5,6,7 . We compared these 17 factors between the 48 subjects who died from SUDEP in Cornwall with 220 of 231 continuous patients living with epilepsy who attended local outpatient epilepsy clinics to determine how strongly these factors are associated with SUDEP risk in a well defined population.…”