Silent threats: awareness and attitudes to communication of SUDEP among neurologists in India: a cross-sectional study

Abstract

Background
International guidelines unequivocally endorse the importance and need to discuss Sudden Unexpected Death in Epilepsy (SUDEP) with people with epilepsy (PWE). India is a country accounting for a sixth of all global epilepsy burden. Despite this little is known of Indian neurologists’ knowledge and attitudes to SUDEP.

Objective
To explore India Neurologists awareness and attitudes to SUDEP communication to PWE.

Methods
A cross-sectional online survey of Likert response questions using validated themes, was circulated among the neurology fraternity, India. Non-discriminatory exponential snowballing technique leading to convenience non-probability sampling was used. The inquiry involved SUDEP-related topics including the awareness, knowledge, need for and importance of counselling. A comparison with other epilepsy risk counselling was made. Descriptive statistics were used for analysis.

Results
Of 275 consenting participants, a majority were male (76 %), had over 5 years of practice (63 %), were private practitioners (61 %) and working in urban areas (99 %). Almost all participants (98 %) knew of SUDEP. A fifth (20 %) counselled most or all PWE of SUDEP compared to 90 % discussing risks from daily activities, 89 % driving risk and 38 % psychiatric concerns. There were significant differences to the likelihood of SUDEP counselling being undertaken based on formal epilepsy training (p < 0.001) familiarity with SUDEP guidelines (p < 0.001), and SUDEP risk factors knowledge (p < 0.001). Further training for SUDEP risk and communication was requested by 90 %.

Conclusion
While most Indian neurologists have SUDEP awareness there is a significant gap in communication of SUDEP risks to PWE. Virtual training and education could help bridge the knowledge gap.