Judith Luker, head of Patient Engagement, Epilepsy and Rare Syndromes (Europe) at UCB Pharma, discusses the sudden unexpected death in epilepsy (SUDEP) communication gap and the importance of physician-patient conversations.
SUDEP is the unexpected death in a patient with epilepsy and is a leading cause of death in these patients.
Recently, Ms Luker presented data at the American Epilepsy Society Annual Meeting in a poster titled “Bridging The Gap Between Neurologists and People with Epilepsy/Caregivers: Systematic Literature Review about SUDEP Conversations”. The poster showed the extent to which doctors communicate the risks of SUDEP to patients and caregivers. From the review, it was discovered that caregivers and families of epilepsy patients wanted to be informed about SUDEP. They believed awareness allowed a chance at mitigating the risk. Benefits of these conversations were also apparent in the grief process for families that had lost someone to SUDEP. When these conversations were absent, the families felt much more shock and anger due to the lack of awareness.
As Ms. Luker explains, there is an apparent gap in the communication between doctors and patients and their families. While most physicians feel these conversations are important, many are not having them. Reasons for this include lack of time, perceived emotional reaction, anxiety of affecting quality of life by adding onto the burden, belief in the ineffectiveness of preventative measures, and belief that there was little risk of SUDEP.
The poster also provides some suggestions about starting conversations about SUDEP in an effective manner. Such measures include:
- Having the conversation in person
- Let the conversation be open and unscripted
- Using empathetic language
- Providing educational materials for support
- Following up on the conversation to ensure retention.
For more information on this and other rare neurological disorders, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/
