Sudden unexpected death in epilepsy (SUDEP) disclosure in pediatric epilepsy : an Italian survey on “to tell or not to tell”

Background and objectives Although there has recently been significant debate regarding the importance of disclosing the risk of SUDEP, professional societies and clinical practice guidelines currently recommend that the risk of SUDEP be disclosed as part of a comprehensive epilepsy education program. Therefore, the primary aim of the present study was to examine whether healthcare providers treating pediatric patients with epilepsy in Italy would disclose the risk of SUDEP to the parents of children with epilepsy. Methods The present study assessed data from a questionnaire that collected sociodemographic information and clinicians’ attitudes towards SUDEP. The survey was available online from September to December 2015. Chi-squared (χ2) tests and multivariate logistic regression analysis were performed when appropriate, and a qualitative content analysis of open-ended questions was performed. Findings A total of 114 medical doctors (71 females and 43 males) completed the questionnaire. Of the respondents, 18 (16.2%) stated that all patients should be counseled about SUDEP, 22 (19.8%) thought that the majority should be, 58 (52.3%) said that only a minority should be, and 13 (11.7%) believed none should be. With respect to physicians’ experience in counseling about SUDEP, only 2 (1.8%) counseled all their patients. A univariate logistic regression analysis showed that the factors associated with “not counseling about SUDEP at all” were the low number of patients with epilepsy they took care of (p < 0.01), fewer years of experience (p = 0.03), and the belief that it was safe from a legal point of view (p < 0.001), The main reasons for counseling about SUDEP were refractory course of epilepsy (79%) and if the parent/patient requested information (65%). Additionally, the findings of the qualitative analysis highlighted the emotional difficulties that neuropediatricians encounter when dealing with the disclosure of SUDEP. Conclusions The present findings showed that a minority of neuropediatricians in Italy counseled all parents of their patients about SUDEP. Educational training may help physicians better communicate with the patient/parents regarding this difficult issue.