Aim To assess the applicability of a detailed questionnaire administered by a lay person to bereaved relatives on sudden death in epilepsy.
Methods After basic training, the questionnaire, based on a previously used tool, was administered through telephone interviews carried out by two workers from Epilepsy Bereaved with relatives of deceased patients.
Results The survey obtained complete and detailed data on most items included. SUDEP was stated as the cause of death in 17/31 transcribed interviews, three with reportedly mild epilepsy and three relatively recent onset seizures. Three relatives reported having received some information about SUDEP from the medical team. More than half the families were not contacted by the medical team after death and counselling was offered to 15 only.
Conclusion The applicability of administering this questionnaire by a lay person familiar with the field was demonstrated. Data obtained was assessed as high quality with limited modifications to the questionnaire needed. This tool may be useful for a SUDEP register. The increase in death certificates listing SUDEP in 54.8% compared to 3.8% (1/26) in an older study suggests a greater awareness by pathologists and coroners. On the other hand, counselling and a meeting with the treating specialist were infrequently offered.