In a new study published in Epilepsy & Behavior, Dr. Zachary Grinspan, associate professor of population health sciences, and colleagues researched how often and why clinicians counsel people with epilepsy about sudden unexpected death in epilepsy (SUDEP). To help understand the gaps in counseling, the researchers looked at clinical notes of 77,924 patients from six hospitals between 2010 and 2014. They found that only one percent of patients received SUDEP counseling, and the frequency of counseling did not increase in the period studied. Reasons for counseling included poor medication adherence, lifestyle factors, patient/family reluctance to make recommended medication adjustments, epilepsy surgery considerations, and patient education. They also noted that clinicians with senior academic titles were more likely to counsel for patient education only, the hospital where clinicians work may influence counseling practices, and that clinicians in adult practice were more likely to document SUDEP counseling. The researchers suggest counseling design interventions, including focusing on junior clinicians and having the conversation about SUDEP soon after the onset of epilepsy.
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