title: 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.
authors.affiliation: School of Medicine, University of Milan, Milan, Italy. elena.vegni@unimi.it
authors.forename: Elena
authors.initials: E
authors.lastname: Vegni
authors.forename: Daniela
authors.initials: D
authors.lastname: Leone
authors.forename: Maria Paola
authors.initials: MP
authors.lastname: Canevini
authors.forename: Paolo
authors.initials: P
authors.lastname: Tinuper
authors.forename: Egidio Aldo
authors.initials: EA
authors.lastname: Moja
mesh_terms: D003645:Death, Sudden / Q000209:etiology*; D004827:Epilepsy / Q000150:complications*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007558:Italy; D008297:Male; D009462:Neurology; D010820:Physicians; D010865:Pilot Projects; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D014342:Truth Disclosure