‘If you’re gonna die, you’re gonna die’: Young adults’ perceptions of sudden unexpected death in epilepsy

Harden, Jeni; Tonberg, A.; Chin, Richard; McLellan, Ailsa; Duncan, Susan E.

doi:10.1177/1742395314557705

Cited by 21 publications

(47 citation statements)

References 24 publications

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“…Most were either untroubled by the initial disclosure of SUDEP or reported initial anxiety that was not long-lasting, whereas the majority expressed a fatalistic view of SUDEP as something outside of their control. 26 responders were aware of SUDEP, whereas 89.5% wished to be informed about SUDEP. 25 Similar to SUDEP, which is perceived as a rare complication of epilepsy despite its high public care burden, 5 suicidal ideations in patients on anticonvulsive medication were discussed even more rarely, and this constitutes a novel finding.…”

Section: Discussionmentioning

confidence: 99%

“…Most thought that disclosure should happen at the time of the diagnosis or soon after, preferably in a face‐to‐face consultation; clinician judgment on timing was highlighted. Most were either untroubled by the initial disclosure of SUDEP or reported initial anxiety that was not long‐lasting, whereas the majority expressed a fatalistic view of SUDEP as something outside of their control . A US‐based survey in patients addressed the question of whether caregivers or patients with epilepsy know about SUDEP and what factors are associated with knowing.…”

Section: Discussionmentioning

confidence: 99%

“…Indeed, the second most frequently mentioned reason in our survey for discussing SUDEP was patients themselves asking for information on SUDEP. Studies in patients 18,[25][26][27][28] have shown that a majority expected the treating neurologist to provide information on SUDEP. A survey 18 of 67 parents from the United Kingdom revealed that 91% wanted to know about SUDEP, whereas only 3% did not want to know more.…”

Section: Discussionmentioning

confidence: 99%

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Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians

et al. 2016

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SUMMARYObjective: To examine the attitudes toward counseling about sudden unexpected death in epilepsy (SUDEP) and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians, and to determine factors associated with not discussing SUDEP. Methods: Questionnaires were sent to approximately 5,000 neurologists and neuropediatricians in 2014 regarding respondents' demographics, their working environments, and how often they discussed SUDEP, suicidal ideations on anticonvulsive medication, driving restrictions, and risks in daily life activities. Results: In total, 519 surveys were completed (respondents' mean age: 45.5 years, 41.6% female, 66.9% adult neurologists, 31.0% neuropediatricians). A minority of 2.7% reported that they counseled all of their patients on SUDEP, 8.7% counseled most of the time (50-90%), 20.8% sometimes (10-49%), 44.5% rarely (1-9%), and 23.3% reported not counseling about SUDEP at all. In contrast, 92.9% reported that they counseled all patients about driving restrictions and 81.5% about risks in daily life activities. Suicidal ideations were discussed in 59.0% for some and in 3.3% for all patients, whereas 35.1% of respondents reported never discussing suicidal ideations. Independent predictors of not discussing SUDEP were no additional epilepsy training, no or uncertain SUDEP cases in the past, <10 years in practice, <25 epilepsy patients seen per quarter, and the opinion of a lack of consequences in SUDEP prevention. The opinion that SUDEP is a risk factor in particular patient groups and the attitude that all risks should be discussed predicted counseling on SUDEP. Significance: Our findings show a discrepancy between guidelines and practice regarding the discussion of premature mortality due to SUDEP or suicidality. Both are not

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians

et al. 2016

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“…It is not known whether informed patients will adopt positive strategies and crucially whether this reduces their risk of SUDEP. There is emerging evidence that despite patients and caregivers experiencing an initial reaction of anxiety that this is not sustained . To adopt change in behavior among those undertaking epilepsy clinics the risk‐benefit ratio has to be in favor of the intervention; if the risk is not sustained from informing, then what about the benefit from informing?…”

Section: Resultsmentioning

confidence: 99%

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

2015

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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.

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“…1 Research on this topic has focused on cohort studies 1 and whether risk should be explained to patients. 3 However, equally important and currently unanswered questions are: can group and individual risks for death be identified, perhaps using patients' routine electronic records? Are some identified risks amenable to better medical management?…”

mentioning

confidence: 99%

Avoiding premature death in epilepsy

Ridsdale¹

2015

BMJ

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‘If you’re gonna die, you’re gonna die’: Young adults’ perceptions of sudden unexpected death in epilepsy

Cited by 21 publications

References 24 publications

Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians

Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians

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

Avoiding premature death in epilepsy

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