Discussing SUDEP: Have we improved?—A retrospective case note analysis

Abstract

Summary Sudden unexplained death in epilepsy (SUDEP) is the most common cause of death in epilepsy. Controversy surrounds its discussion with patients, with discrepancy between clinical practice and guideline recommendations; a previous audit of local practice in 2012 found that in only 4% of patients’ notes was there documented evidence of SUDEP discussion. The aim of this study was to evaluate current clinical practice and to determine whether there had been a change in practice following publication of the initial audit. A retrospective case note review was undertaken on all patients with a diagnosis of epilepsy attending a specialist epilepsy clinic in Tayside from January 1, 2012 to March 31, 2012. A documented discussion regarding SUDEP was recorded in 81 (34%) of 240 patients, an increase from previous review. Documented discussion was more likely to occur in new referrals and in those with ongoing generalized seizures, and conversely less likely to occur in those with a long history of seizures and drug‐resistant epilepsy. This repeat audit demonstrates improvement in practice; however, the minority of patients are still being informed, with those at higher risk statistically less likely to be informed.

Keep safe: The when, why and how of epilepsy risk communication

“…Ross et al [46] also found an increase of case note documented discussions from 4 % in 2009, to 31 % of all referrals a year later, where 240 of 314 were available for the second audit. Young et al (3,UK) observed that it may be important to repeat discussions to ensure awareness and understanding, particularly for those with ID living in a care setting, or with less recent diagnosis.…”

“…found that SUDEP conversations were more likely to be held where people are non-compliant with medication. However, despite the emphasis on high risk people being more informed, a study by Ross et al [46] suggested that those who had had epilepsy for longer than 15 years, had drug resistant epilepsy and/ or Learning Disability, were less likely to have been informed.…”

“…Codes explained including how they were derived from the interview guide. Ross et al (2015) [46] Moderate quality-confounding variables possibly not considered e.g. not documenting SUDEP discussion.…”

Living with Epilepsy: It's Not Just a Matter of Quality

“…In a survey of neurologists, over 60% reported discussing SUDEP rarely or not at all with patients (8). In audits of local practice habits done in 2009 and again in 2012, an increased frequency of documentation of SUDEP discussions with patients was noted, with a rise from 4 to 34 percent of visits (9, 10). SUDEP is not the only source of mortality for persons with epilepsy, but one could argue that it serves as a reasonable indicator of how much attention is paid to mortality issues in clinical encounters.…”

After sudden unexpected death in epilepsy: Lessons learned and the road forward

“…A further survey of practice reported that 20% would inform at the time of diagnosis . A more recent study may demonstrate a change in practice; in Scotland, 67% of new diagnoses had a documented discussion of SUDEP at initial encounter . Focus groups of adult and pediatric health care providers including neurologists, epileptologists, and nurse specialists (CNSE), demonstrated that providers believe that some patients should not receive SUDEP information at a first appointment and that allowing some time to pass before this discussion is preferable …”