Decreasing the risk of SUDEP: Structured communication of risk factors for premature mortality in people with epilepsy

BACKGROUND: Good practice guidelines highlight the importance of making people with epilepsy aware of the risk of premature mortality in epilepsy particularly due to Sudden Unexpected Death in Epilepsy (SUDEP). The SUDEP and Seizure Safety Checklist ("Checklist") is a structured risk communication tool used in UK clinics. It is not known if sharing structured information on risk factors allows individuals to reduce SUDEP and premature mortality risks. AIM: To ascertain if the introduction of the Checklist in epilepsy clinics lead to individual risk reduction. METHOD: The Checklist was administered to 130 consecutive people with epilepsy attending an epilepsy specialised neurology clinic and 129 attending an Intellectual Disability epilepsy clinic within a 4 month period. At baseline, no attendees at the neurology clinic had received formal risk advice while all attending the ID clinic had on multiple occasions for six years. A year later the Checklist was re-administered to each group and scores were compared with baseline and between groups. RESULTS: Of 12 risk factors considered there was an overall reduction in mean risk score for the general population (p=0.0049) but not for the ID population (p=0.322). Sub analysis of 25% at most risk of both populations showed both sets had a significant reduction in risk scores (p<0.001). CONCLUSION: Structured discussion results in behavioural change which reduces individual risk factors. This impact seems higher in those who are at higher risk currently. It is important clinicians share risk information with individuals as a matter of public health and health promotion.