Sudden Unexpected Death in Epilepsy (SUDEP) and seizure safety: Modifiable and non-modifiable risk factors differences between primary and secondary care

Introduction: The SUDEP and Seizure Safety Checklist (“Checklist”) is a risk factors Checklist based around a person with epilepsy (PWE) demographics, seizure, physical, psychological, and lifestyle issues. The Checklist provides a cumulative picture of current risk when applied to a PWE. This study compares and contrasts risk factors of PWE in primary versus secondary care. Methods: The Checklist was applied to all PWE registered in four primary care practices in central Cornwall UK (pop: 120,000). Individual, modifiable, non-modifiable, and total risk factors and scores were compared between PWE open to secondary care and those not. Statistical tests were used to calculate significance of individual risk factors in primary or secondary care, to compare the total risk scores between care settings and to find the frequency differences of each risk factor between primary practices. Results: People with total and non-modifiable risk scores were higher in secondary care (both p < 0.001). However, modifiable risk scores were higher in primary care (p < 0.001). Psychiatric concerns were the most prevalent modifiable risk factor in primary care. There were significant differences in the risk profiles between all four primary care practices. Conclusion: This study highlights that there is a lack of clarity on who is referred to secondary care and when. There needs to be an evidence-based system to allow for a bidirectional flow of PWE considering their fluctuating risk. The Checklist can be a decision support tool to enable this.