Attitudes of Brazilian epileptologists to discussion about SUDEP with their patients: Truth may hurt, but does deceit hurt more?

Abdalla, Ively Guimarães; Scorza, Carla A.; Cavalheiro, Ésper A.; Albuquerque, Marly de; Almeida, Antônio-Carlos G. de; Scorza, Fúlvio A.

doi:10.1016/j.yebeh.2013.03.017

Epilepsy & Behavior

2013

DOI: 10.1016/j.yebeh.2013.03.017

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Attitudes of Brazilian epileptologists to discussion about SUDEP with their patients: Truth may hurt, but does deceit hurt more?

Ively Guimarães Abdalla

Carla A. Scorza

Ésper A. Cavalheiro

et al.

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Cited by 11 publications

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“…Further to this, there is no consensus as to how, when, and what should be discussed before a patient is considered adequately informed. Given this debate, it is not surprising that only 5–9% of physicians and 6% of clinical nurse specialists in epilepsy inform all their patients about SUDEP, with 44–86% informing few or none of their patients …”

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confidence: 68%

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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confidence: 68%

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

2015

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“…Although epileptologists have not yet established a global consensus on this subject (30,31), recent studies suggest that providing information about SUDEP to individuals, relatives, and caregivers is most likely more beneficial than harmful in most cases (32). We recently evaluated a survey of the current practice of all 293 epileptologists officially accredited at the Brazilian League of Epilepsy (LBE) (33). Unfortunately, the participation rate was very low, as only 44 professionals answered the questions (33).…”

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confidence: 99%

“…We recently evaluated a survey of the current practice of all 293 epileptologists officially accredited at the Brazilian League of Epilepsy (LBE) (33). Unfortunately, the participation rate was very low, as only 44 professionals answered the questions (33). Of these, 14% of epileptologists discussed SUDEP risk with the majority of their patients, 76% with a minority of their patients, and 10% with none (33).…”

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confidence: 99%

“…Unfortunately, the participation rate was very low, as only 44 professionals answered the questions (33). Of these, 14% of epileptologists discussed SUDEP risk with the majority of their patients, 76% with a minority of their patients, and 10% with none (33). Interestingly, of all such professionals who discuss SUDEP with a minority of their patients, approximately half of them (44%) discussed the possible occurrence of SUDEP when patients asked about it (33).…”

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confidence: 99%

“…Of these, 14% of epileptologists discussed SUDEP risk with the majority of their patients, 76% with a minority of their patients, and 10% with none (33). Interestingly, of all such professionals who discuss SUDEP with a minority of their patients, approximately half of them (44%) discussed the possible occurrence of SUDEP when patients asked about it (33). It should be noted that although the data obtained in our study are consistent with the current literature, the low participation of Brazilian epileptologists in our assessment is an issue that should be reviewed and discussed.…”

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confidence: 99%

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Profile of neurologists in Brazil: a glimpse into the future of epilepsy and sudden unexpected death in epilepsy

Amorim¹,

Scorza²,

Cavalheiro³

et al. 2013

Clinics

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Sudden unexpected death in epilepsy: What Saudi people with epilepsy want to know—A cross‐sectional study

Aljumah

Al-Attas

Al‐Qahtani

et al. 2023

Epileptic Disorders

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ObjectiveSudden unexpected death in epilepsy (SUDEP) is a significant cause of mortality in people with epilepsy (PWE), with an incidence of 1 per 1000 members of the population. In Saudi Arabia, no data are available that inform local clinical practitioners about the attitudes of PWE regarding SUDEP. The aim of this study was to investigate the perspectives of Saudi PWE toward SUDEP and to assess their knowledge of SUDEP.MethodsA cross‐sectional questionnaire‐based study was conducted at the neurology clinics of King Abdul‐Aziz Medical City, Riyadh and Prince Sultan Military Medical City, Riyadh.ResultsOf the 377 patients who met the inclusion criteria, 325 completed the questionnaire. The mean age of the respondents was 32.9 ± 12.6 years. Of the study subjects, 50.5% were male. Only 41 patients (12.6%) had heard about SUDEP. Most patients (94.5%) wanted to know about SUDEP, of whom 313 (96.3%) wanted to receive this information from a neurologist. A total of 148 patients (45.5%) thought that the appropriate time to receive information about SUDEP was after the second visit, whereas only 75 (23.1%) wanted to learn about SUDEP during the first visit. However, 69 patients (21.2%) thought that the appropriate time to be informed about SUDEP was when seizure control had become more difficult. Almost half (172, 52.9%) of the patients thought that SUDEP could be prevented.SignificanceOur findings suggest that most Saudi PWE do not know about SUDEP and want to be counseled about their risk of SUDEP by their physicians. Therefore, education of Saudi PWE about SUDEP must be improved.

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Attitudes of Brazilian epileptologists to discussion about SUDEP with their patients: Truth may hurt, but does deceit hurt more?

Cited by 11 publications

References 24 publications

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

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

Profile of neurologists in Brazil: a glimpse into the future of epilepsy and sudden unexpected death in epilepsy

Sudden unexpected death in epilepsy: What Saudi people with epilepsy want to know—A cross‐sectional study

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