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  1. Stephen Keddie1,2,
  2. Heather Angus-Leppan1,2,
  3. Thomas Parker1,
  4. Sebastian Toescu1,
  5. Adina Nash1,2,
  6. Lola Adewunmi1,
  7. Rebecca Liu1,2
  1. 1Epilepsy Initiative Group, Royal Free Hospital London
  2. 2University College London


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.

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