Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists

Abstract

Sudden unexpected death in epilepsy (SUDEP) is a syndrome where a person with epilepsy dies suddenly and no other cause of death is found. The question of informing patients and their families about SUDEP remains a problematic issue. The aim of this study is to explore whether Italian physicians interested in epilepsy believe that they should discuss SUDEP with patients and/or their families. A total of 315 questionnaire were distributed, of which 195 (61.9%) were returned. Seventeen respondents (8.76%) discussed SUDEP with all of their patients, 38 (19.59%) with the majority of patients, 120 (61.85%) with very few of their patients and 15 (7.73%) with none of their patients. No statistical differences among groups were found for gender, professional age (≤ 10 years; ≥ 11 years ≤ 20 years; ≥ 21 years ≤ 30 years; ≥ 31 years) and medical specialty (neurologists vs. others). Open questions offered insights into the physicians' problem of managing the negative emotions of patients/family and why the physicians decided to give information.

Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy

“…Most of our patients (61.8%) noted that being informed would cause permanent anxiety, thereby negatively affecting the quality of life, which corresponds to the previously discussed doctor opinions on the effects of being informed (Beran et al, 2004;Vegni et al, 2011;Suna et al, 2015). However, we know from prospective studies that such anxiety will not continue in the long term Tonberg et al, 2015;Xu et al, 2015;Ramachandran Nair and Jack, 2016).…”

“…In contrast to the findings of surveys analysing SUDEPdiscussion practices in the UK (Morton et al, 2006), Italy (Vegni et al, 2011), the USA and Canada , where only a small percentage of respondents (7.5%, 7.7%, and 11.6%, respectively) never discuss SUDEP with their patients, we previously reported that only 21% of Latvian neurologists inform their patients about the risk of SUDEP (Suna et al, 2015). The main reason not to disclose SUDEP is the caregivers' belief that being informed about the syndrome might cause permanent anxiety or might have a negative influence on the quality of life by causing fundamental lifestyle changes in epilepsy patients (Beran et al, 2004;Vegni et al, 2011;Suna et al, 2015).…”

“…The main reason not to disclose SUDEP is the caregivers' belief that being informed about the syndrome might cause permanent anxiety or might have a negative influence on the quality of life by causing fundamental lifestyle changes in epilepsy patients (Beran et al, 2004;Vegni et al, 2011;Suna et al, 2015). Contrary to expectations of physicians, studies in epilepsy patients indicate initial anxiety after being informed about SUDEP, rather than a long-standing negative impact after disclosure Tonberg et al, 2015;Xu et al, 2015;Ramachandran Nair and Jack, 2016).…”

SUDEP revisited – A decade on: Have circumstances changed?

“…Since the publication of the findings of the outpatient study of SUDEP [1], there has been considerable debate regarding when and whom to tell about it [5,[19][20][21][22][23][24][25][26][27]. It remains controversial as to whether all patients should be told and when [19,20,[24][25][26][27][28][29].…”

“…It remains controversial as to whether all patients should be told and when [19,20,[24][25][26][27][28][29]. The actual telling about SUDEP may have negative consequences [1,28] causing psychological effects and even provoking non-epileptic seizures [28].…”