Disparity exists between clinical practice and guidelines on discussion of Sudden death in epilepsy (SUDEP) with patients. This study examined how patients were informed about SUDEP; the impact of such discussion, and their views on the discussion.
Methods A quantitative/qualitative questionnaire was given to 50 consenting patients attending epilepsy clinics. Exclusions were patients with intellectual disability, and/or those deemed at risk of negative consequences on completing the study.
Results 98% of patients were aware of the importance of medication adherence, 78% of driving regulations in epilepsy, and 84% of factors influencing seizure frequency. Only 50% of patients were aware of SUDEP and 38% of status epilepticus.
42% of patients preferred SUDEP information at diagnosis and 36% only after three clinic appointments.
Negative emotional responses (in 38%), and not behavioural changes, resulted from SUDEP discussions.
Conclusions In this small in-depth study, only half the patients recalled information about SUDEP. More than one-third of patients reported adverse consequences. There was no improvement in self-management.
We suggest a paradigm shift: embedding SUDEP discussion with all potential complications of epilepsy; and emphasising optimal healthcare and self-management. This model has been successfully applied in other areas to empower patients and improve outcome.