<scp>SUDEP</scp>'s health burden and when to talk about it

Sudden unexpected death from epilepsy (SUDEP) has attracted considerable attention in the past several years, and there is increasing pressure from the epilepsy community to encourage medical professionals to tell their patients about it. Websites have sprung up to provide information about SUDEP, including the Epilepsy Foundation's SUDEP Institute, Canada's SUDEP Aware, the United Kingdom's SUDEP Action, and Epilepsy Australia. These organizations also work with the bereaved. In a Scottish coroner's inquest after the SUDEP deaths of two girls, a recommendation was made that “The vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP on first diagnosis or if in the particular circumstances of that patient, there are exceptional circumstances for delaying immediate provision of the information, then within a very short time thereafter.”1 How are we doing with our understanding of the risk and burden of SUDEP and when it is discussed with patients and families? In this edition of Epilepsia, we have a string of articles and commentaries on this subject. We start with a systematic review of SUDEP and its public health burden by Thurman et al.2 In their analysis the estimated annual incidence was 1.16 per 1,000 patients, with most SUDEP deaths reported in the third and fourth decades of life. The authors further calculated that 100,510 years of patient's life are lost from SUDEP for people living up to age 75 years. Lost years of life from SUDEP was second only to stroke among other neurologic diseases. These are staggering statistics that should be emphasized to public health officials and policymakers. We next turn to the question of when patients learn about SUDEP. Kroner et al.3 address the question of whether caregivers or patients with epilepsy know about SUDEP and what factors are associated with knowing. Data from an Internet survey and a clinic-based survey show that 71% of Internet responders knew about SUDEP compared to 38.8% of clinic responders. Better educational attainment of caregiver responders accounted for this difference. Prior knowledge of SUDEP was related to more severe epilepsy of longer duration and provision of care by an epileptologist. Patients with epilepsy and caregivers from both surveys wanted their doctor to discuss SUDEP with them, even though they experienced fear, anxiety, and sadness when this information was imparted. This conversation continues in two accompanying articles. Stevenson and Stanton4 describe their profound sorrow of learning about SUDEP after a child has died and the helplessness and anger at not being told so that they could more carefully plan needed care. This led the Stanton family to form the Danny Did Foundation, which was featured in My Epilepsy Story. This message is echoed by the voices of other bereaved parents who took part in SUDEP: Continuing the Global Conversation. Many had never heard about SUDEP and lost their children. Following up on the conversation between doctors, patients, and families, Donner and Buchhalter5 provide a clear and practical guide to discussing SUDEP with patients and caregivers in their Commentary, and they stress that these conversations strengthen the trust between the doctor, the patient, and the family. As part of this series, we invite readers to participate in a poll on the subject. Please go to http://surveys.verticalresponse.com/a/show/1539433/a6bed9de39/0 and provide your answers to the following questions. Results will be published in later editions of Epilepsia. Should readers have added ideas or thoughts on the subject of SUDEP and when to talk about it, please contact us at Epilepsia@epilepsia.com. In your opinion, when in the discussion with a patient with newly diagnosed epilepsy should the possibility of SUDEP be discussed? As a provider, how often do you discuss SUDEP with the following patients or their families? (responses will be: always, most of the time, some of the time, never): Gary Mathern, Epilepsia Co-Editor in Chief Astrid Nehlig, Epilepsia Co-Editor in Chief Dale C. Hesdorffer, Epilepsia Associate Editor

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