Challenging conversations with patients and families are a regular occurrence in epilepsy clinics, and clinicians often struggle with the best way to have them. Sarah Kelley, director of the Johns Hopkins Epilepsy Monitoring Unit, chaired a special interest group devoted to this topic during the 2023 American Epilepsy Society annual meeting. Presenters offered strategies for three challenging yet vital conversation topics in the field of epilepsy: surgical concerns, sudden deaths from the condition and important discussions with teenage girls.
Hello, I'm Sarah Kelly. I am an Associate Professor of Clinical Neurology at Johns Hopkins and Director of the Pediatric Epilepsy Monitoring Unit. This year at the American Epilepsy Society meeting in Orlando Florida, I was the chair of the pediatric case discussions special interest group. This year, the theme for the special interest group was difficult discussions in the pediatric epilepsy clinics, challenging conversations with patients and families occur every day in the pediatric epilepsy. Clinic providers often struggle with the best way to address these topics. The difficulties may arise from the seriousness of the conversation, lack of comfort by the provider in discussing sensitive topics or hesitancy of the family to discuss these topics. Even though these conversations are difficult, they are vital to the well being and care of our patients. Our pediatric sig gave our attendees additional strategies for discussing these difficult topics. Our sig focused on three topics including important discussions to have with the teenage girl, discussing sudden unexpected death in epilepsy suited up and addressing epilepsy surgery concerns including non curative yet beneficial surgical options. Each presenter provided tools for clinicians to use during these discussions in clinic. Doctor Sarah Weatherspoon from Tennessee discussed the topic of contraception and reproductive health in young women with epilepsy and creating a space to have this important discussion within the epilepsy clinic. She discussed contraception available to this population pros and cons of various forms of contraception, how to discuss these options as well as the importance of discussing this with all young women women with epilepsy, even those who are not neurotypical. Next. Doctor Elizabeth Donner from Toronto and Doctor Jojo Yang from North Carolina discussed the difficult discussions surrounding sudden unexpected death in epilepsy known as su they discussed why this conversation is important to have with all patients with epilepsy, whether the patients have well controlled epilepsy without developmental delay or whether the patients have intractable epilepsy with intellectual disability and how to tailor the discussions based on individual patient needs. Doctor Ahmed Mar Ashley from Johns Hopkins then discussed the challenges of discussing surgical treatments for epilepsy within the clinic. He discussed the importance of considering surgery as a treatment option in a patient with epilepsy as it can offer the only chance for an epilepsy cure in some patients. He discussed various surgical options, why clinicians and patients should not be afraid to discuss these options and how to discuss palliative options. He discussed the risk of surgical failures with the understanding that surgery can have a positive life changing outcome for patients and families. Together. These talks addressed some of the most difficult conversations in the pediatric epilepsy clinic these conversations are so important to excellent patient care. Our goal was to decrease the apprehension that providers feel in discussing these topics by providing practical suggestions as to how to successfully bring up and discuss these topics with our patients. I would like to thank all of the participants of this cig and thank you so much for joining me in this discussion.
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