Slide 1. Slide 2 Epilepsy Foundation and American Epilepsy Society Joint Task Force. Slide 3 National Institutes of Health Workshop

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1 Slide 1 Update: PAME Partners Against Mortality in Epilepsy and SUDEP Sudden Unexpected Death in Epilepsy EFMN Seizure Smart Conference July 17, 2014 Tess Sierzant, RN, MS, APRN-BC Slide 2 Epilepsy Foundation and American Epilepsy Society Joint Task Force Formed 2006 Face to face meeting June 2007 Objectives Develop position statement Design methods to educate Recommend research directions Identify large scale prospective studies Identify preventive strategies Slide 3 National Institutes of Health Workshop November 2008 Global representation Disciplines outside of epilepsy Cardiology, SUID/SIDS Two groups Research Education

2 Slide 4 NIH Workshop Objectives Design methods to raise awareness in the medical and lay communities of the risk of SUDEP. Investigate when, what, and how to best discuss SUDEP with patients and caregivers Involve experts from other disciplines related to sudden death Identify possible preventive strategies for SUDEP Develop a research agenda for SUDEP that includes basic and clinical directions Formulate and establish a SUDEP research consortium Slide 5 Development Chronology March 2009 SUDEP Coalition Epilepsy Foundation SUDEP Aware AES CURE NIH October 2010 CDC Mortality in Epilepsy Project June 2012 First PAME Conference Chicago Slide 6 SUDEP Institute February, 2013 Partners Epilepsy Foundation Epilepsy Therapy Project American Epilepsy Society CURE Citizens United for Research in Epilepsy Danny Did Foundation FACES Finding a Cure for Epilepsy & Seizures NINDS National Institutes of Neurological Disorders and Stroke SUDEP Aware

3 Slide 7 2 nd PAME Conference June 19-22, 2014 Minneapolis Participants and Planners Those directly impacted by SUDEP and epilepsy mortality Physicians, nurses, and other care providers Basic Scientists Slide 8 Highlights from the PAME Presentations Drawn directly from the presentations Title slide denotes the specific presentation Each presentation was minutes Select highlights only will be presented You are strongly encouraged to learn more by visiting websites of the various organizations involved in the conference Slide 9 Key Topics Day 1 Overview of Mortality related to epilepsy SUDEP Mechanisms: Respiratory Epilepsy Mortality Surveillance and Provider Guidelines SUDEP Mechanisms: Sleep and Arousal

4 Slide 10 Overview of Mortality in Epilepsy: Short- and Long-term Risks David J. Thurman, MD, MPH Emory University School of Medicine Atlanta, Georgia Slide 11 Measures of Mortality Mortality rate: number of deaths each year Per 100,000 population Per 1,000 people with epilepsy Standardized mortality ratio (SMR) rate of death in study group rate of death in matched comparison group - Compares risk of death among a group of people with epilepsy with the risk of death in the general population Slide 12 Epilepsy Mortality On average, the overall mortality risk (SMR) among people with epilepsy appears 2-3 times higher than among the general population Among individuals with epilepsy the risk varies greatly, depending on several factors, especially, Underlying cause of epilepsy Type of seizure and degree of seizure control Tomson & Forsgren, Lancet 2005; 365: 557

5 Slide 13 Defining Epilepsy-related Mortality Deaths from underlying central nervous system conditions causing epilepsy Perinatal e.g. cerebral palsy Brain tumors Stroke Traumatic brain injury Progressive disease e.g. Alzheimer disease Slide 14 Defining Epilepsy-related Mortality Deaths caused directly by epilepsy Sudden unexpected death in epilepsy (SUDEP) Status epilepticus with preexisting epilepsy Seizure-related accidental injury e.g., falls, drowning, motor vehicle crashes Suicide Slide 15 Overall Short- and Long-term Mortality Risk by Cause of Epilepsy Modestly higher risk for epilepsy without known separate underlying CNS disease Idiopathic or cryptogenic Markedly higher risk for epilepsy with known underlying CNS disease symptomatic Risk highest in first 5 years after diagnosis Differences in risk are greater with younger age of onset

6 Slide 16 Sudden Unexpected Death in Epilepsy SUDEP Definition: sudden, unexpected, non-traumatic death in a person with epilepsy, without evidence of structural or toxicological cause of death Many problems accurately identifying SUDEP cases for epidemiological studies Many MDs and coroners unfamiliar with SUDEP Death certificate data inadequate Insufficient resources for medical examiner investigations Slide 17 Impact of Studies of Mortality in Epilepsy A substantial public health burden of premature death is directly attributable to epilepsy Risks of premature death vary greatly among people with epilepsy Many or most of these deaths may be preventable Patients and their families should be counseled accordingly, emphasizing ways to reduce risk Slide 18 Key Topics Day 2 Future directions for respiratory research How patients, families, & physicians can work together to improve SUDEP case identification Non-SUDEP Causes of Mortality SUDEP Mechanisms: Autonomic and Cardiac

7 Slide 19 Key Topics Day 2 Epilepsy and Grief SUDEP Mechanisms: Genetics How Organizations are promoting understanding of mortality in epilepsy Slide 20 Epilepsy, Antiepileptic Drugs, and Cardiovascular Disease Scott Mintzer, MD Associate Professor of Neurology Jefferson Comprehensive Epilepsy Center Thomas Jefferson University Philadelphia, Pennsylvania Slide 21 Epilepsy and Cardiovascular Disease People with epilepsy have higher rates of vascular disease Enzyme-inducing anti-seizure drugs exert adverse effects on multiple surrogate markers of vascular risks it is possible that they increase the risk of myocardial infarction and other vascular conditions

8 Slide 22 Epilepsy and Cardiovascular Disease At a minimum, patients taking these drugs need to be screened for vascular risk e.g. lipid panel, cardiac and carotid imaging and perhaps we should consider prescribing changes Slide 23 Grief and Loss in Epilepsy Mortality Jean Donalty Lisa Riley Andres M. Kanner, MD Linda Coughlin Brooks, RN, BSN, CT Paul Scribner, MSW, LCSW-C Slide 24 Epilepsy and Grief Many shared stories of their loved ones All had lost someone to the effects of epilepsy SUDEP, depression, status epilepticus

9 Slide 25 What is Normal Grief? Normal grief is found in the majority of survivors Unique to each individual Grief eventually lessens as a person readjusts to loss Often includes feelings of intense sadness, protest emotions, ruminations about the loss, insomnia, poor appetite and weight loss Slide 26 Normal Grief Grief is not usually something one recovers from or gets over but incorporates into one s life as part of who they are loss is never regained or replaced Though painful, disruptive and consuming, it is usually tolerable and self-limited Grief begins to fade into adequate coping mechanisms within six months Slide 27 What is Complicated Grief? Define by symptoms, duration, and intensity Incapacitated by grief, significant distress, and functional impairment Emotional numbness, flat, dull, inability to feel pleasure Unsure of his/her own identity and place in the world

10 Slide 28 Complicated Grief Inability to adjust to life without the beloved Effects 3 25% of loss survivors Long-lasting 6 months or more Slide 29 Why is Grief from SUDEP Different? Sudden, unexpected no one ever told me Families believe epilepsy is a disease we live with, not die from Lack of information about SUDEP from the medical community prior to death may stimulate excessive anger Slide 30 Why is Grief from SUDEP Different? Search for more information about SUDEP derails the normal process of grief Family member under investigation for culpability in the death until the diagnosis of SUDEP is made

11 Slide 31 What Organizations are Doing to Promote Understanding of SUDEP Cyndi Wright, BS Director, SUDEP Institute Jeffrey Buchhalter, MD, PhD Professor of Clinical Neuroscience & Pediatrics University of Calgary, Faculty of Medicine Director, Comprehensive Pediatric Epilepsy Center Alberta Children s Hospital Slide 32 Epilepsy Bereaved 1995 SUDEP Action 2013 United Kingdom Achievements International research workshop 1996 Global campaign Political campaign across 4 countries First national register of deaths 2002 National pathology guidelines 2003 National clinical guidelines 2004 SUDEP The Global Conversation 2004 Slide 33 Key Topics Day 3 SUDEP: Devices, Treatments and Prevention

12 Slide 34 Monitoring Devices: What to Know and What to Ask Tom Stanton Executive Director Danny Did Foundation Slide 35 Monitoring Devices Setting expectations what monitoring devices cannot do Most devices make no claim to prevent seizures from occurring, or that they can stop a seizure that is already underway Many devices do not measure reliably for factors other than movement No devices are clinically proven to prevent SUDEP Slide 36 Questions to Ask your Doctor about Devices Would monitoring for seizures help to keep my loved one safer? Would you utilize additional data on seizure activity that a device could provide? What time of day or night is most critical for monitoring?

13 Slide 37 Questions to Ask your Doctor about Devices Which of my child/loved one s seizure types are the most important to monitor for? Could using a pulse oximeter be helpful? Is there technology more comprehensive than a baby monitor that you know of or can recommend? Slide 38 Questions to Ask a Device Manufacturer Who is the target user for your device? How is a caregiver alerted to seizure activity? What is your product s false positive/reliability rate, and are there published data that indicate the effectiveness of the device? What type of seizures can your device detect? Slide 39 Questions to Ask a Device Manufacturer Does it enable GPS functionality? Does your device have a mechanism to share compiled data with a doctor? Can the device track the length of a seizure? What is the product warranty? Are you seeking FDA-approval and if so, where are you in the process?

14 Slide 40 The Role of Self-Management in Managing Epilepsy and Reducing Complications Martha Sajatovic, MD Professor of Psychiatry and Neurology Willard Brown Chair in Neurological Outcomes Case Western Reserve University School of Medicine Cleveland, Ohio Slide 41 Epilepsy Self-Management Broadly speaking, epilepsy self-management is the sum total of steps taken and processes used by a person to control seizures and manage the effects of a seizure disorder. DiIorio, C. (1997). Epilepsy self-management. Handbook of Health Behavior research II: provider determinants. New York, Plenum Press: Slide 42 PAME Closing Session: Lessons Learned and Next Steps Jeff Buchhalter, MD, PhD Gardiner Lapham, RN, MPH

15 Slide 43 Opportunities to Further Advance Science, Care, and Prevention Scientific collaboration to identify and test new hypotheses Translational science Medical Examiners community standards Collaboration between epilepsy centers to collect data Data on seizure detection monitors Slide 44 Opportunities to Further Advance Science, Care, and Prevention Focus on prevention provider communications Standards of care American Academy of Neurology Awareness, family engagement Family support: bereavement and help navigate death investigation Slide 45 Stay a Partner, Stay Involved! Visit the PAME Website learn more! Stay informed and connected Information and awareness: EFMN, SUDEP Institute, CURE, Danny Did Foundation, SUDEP Aware, others Facilitate research: North American Seizure Registry, data sharing Promote forthcoming AAN practice guidelines Identify and pursue collaboration and funding opportunities