1. © 2016 Direct One Communications, Inc. All rights reserved. 1 Obstacles to Epilepsy Diagnosis: If You Don’t Ask, They Won’t Tell Pawan V. Rawal, MD, MHA University of Tennessee Health Science Center, Memphis, Tennessee A REPORT FROM THE 69 th ANNUAL MEETING OF THE AMERICAN EPILEPSY SOCIETY

2. © 2016 Direct One Communications, Inc. All rights reserved. 2 Prevalence of Epilepsy Over a lifetime, approximately 1 in 26 people in the United States will be diagnosed with epilepsy. The prevalence of epilepsy is higher than that of autism, amyotrophic lateral sclerosis, cerebral palsy, multiple sclerosis, and Parkinson’s disease combined. Epilepsy causes an estimated 26% of the burden of neurologic disorders calculated in disability-adjusted life-years (DALYs). Among women, the estimated global burden of chronic epilepsy is greater than that of breast cancer; in men, it is nearly four times greater than that of prostate cancer. Hesdorffer DC et al. Neurology. 2011;76:23; Hirtz D et al. Neurology. 2007;68:326; Laxer KD et al. Epilepsy Behav. 2014;37:59

3. © 2016 Direct One Communications, Inc. All rights reserved. 3 Public Awareness of Epilepsy Although epilepsy is fairly common and affects people of all ages and socioeconomic classes, its public awareness is surprisingly lacking. The average person in the United States is more likely to be able to describe the symptoms of Parkinson’s disease than those of epilepsy, even though seizure disorders are more common. Lack of awareness about the symptoms of the disease, especially among patients with partial seizures or in rural areas, is likely to result in an inability to recognize epilepsy and significant delays in diagnosis and treatment.

4. © 2016 Direct One Communications, Inc. All rights reserved. 4 Contributing Factors Patients with epilepsy who have not been diagnosed usually fall into one of three broad categories: 1.Patients who never thought to ask; 2.Patients who wanted to ask but did not know where to start; and 3.Patients who eventually were seen by a physician but initially were misdiagnosed. A patient who never thought to ask may have spells of unusual, uncontrollable behavior lasting ~ 2 minutes. The fear of spells may result in greater social isolation and an inability to work.

5. © 2016 Direct One Communications, Inc. All rights reserved. 5 Contributing Factors continued Most people are not aware that seizure subtypes such as absence seizures and certain focal seizures do not necessarily involve shaking. Patients with partial seizures account for over one half of individuals with epilepsy, but awareness of this disorder among the general public and media is close to nonexistent. A patient who wanted to ask but did not know where to start may instead turn to the Internet. An increasing number of patients are using Internet search engines to search for medical information. Hauser WA et al. Epilepsia. 1993;34:453; Diaz JA et al. J Gen Intern Med. 2002;17:180

6. © 2016 Direct One Communications, Inc. All rights reserved. 6 Contributing Factors continued The words that patients use to search the Internet for epilepsy symptoms make a big difference. For example, searching Google for “leg numbness” produces results that are much more relevant to a diagnosis of epilepsy than searching for “funny spells.” Online message boards often contain posts from hundreds of anonymous users describing the phenomenon of dreaming while awake and déjà vu feelings, but these people have little to no insight on a possible cause for these happenings.

7. © 2016 Direct One Communications, Inc. All rights reserved. 7 Contributing Factors continued A patient who is experiencing vague symptoms may be referred to a psychiatrist for further evaluation; only after an increase in symptoms leads to social and occupational disability does such a patient usually get a second opinion. Unfortunately, epilepsy (particularly complex partial seizures) is often underdiagnosed, even by neurologists. Physicians should specifically ask patients who present with generalized tonic-clonic seizures about symptoms suggesting complex partial seizures that may have occurred before a generalized convulsion. Ramsay RE et al. Neurology. 2004;62(5 Suppl 2):S24

8. © 2016 Direct One Communications, Inc. All rights reserved. 8 Human Epilepsy Project (HEP) HEP is a multicenter, prospective, observational study that is collecting clinical, imaging, and laboratory data on patients with focal epilepsy. Among 206 patients who initially presented with secondarily generalized tonic-clonic convulsions (SGTCC), a median of ~ 4 days elapsed before treatment with an antiepileptic drug (AED) began. In contrast, patients who presented with at least one complex partial seizure and/or simple partial seizure first began AED therapy a median of 200–400 days later. Hennessy R et al; HEP investigators. AES 2015, Poster 2.138

9. © 2016 Direct One Communications, Inc. All rights reserved. 9 Human Epilepsy Project (HEP) continued Among patients who presented with simple partial seizures and/or complex partial seizures initially, treatment delays led to even more seizures before therapy began: Hennessy R et al; HEP investigators. AES 2015, Poster 2.138

10. © 2016 Direct One Communications, Inc. All rights reserved. 10 Human Epilepsy Project (HEP) continued More than half of the treatment delays among patients who initially had complex partial seizures were attributed to an inability of the patient and/or physician to recognize the seizures: Hennessy R et al; HEP investigators. AES 2015, Poster 2.138

11. © 2016 Direct One Communications, Inc. All rights reserved. 11 Human Epilepsy Project (HEP) continued For patients who first had simple partial seizures, patient and/or physician lack of seizure recognition accounted for about two thirds of the delays. Over one half of the patients who had an initial seizure other than an SGTCC had a generalized convulsion before starting medical therapy. Obviously, there is an urgent need for patient and physician education to facilitate prompt diagnosis and treatment of both simple and complex partial seizures. Hennessy R et al; HEP investigators. AES 2015, Poster 2.138

12. © 2016 Direct One Communications, Inc. All rights reserved. 12 Consequences of Untreated Epilepsy Untreated epilepsy may have a huge impact on a patient’s personal, professional, and social life. Untreated patients are at greater risk for status epilepticus and bodily injury. Patients with undiagnosed epilepsy tend to suffer mental depression and “social disability” due to unpredictable and uncontrolled episodes. The patient previously described as the one who never thought to ask is a perfect and, unfortunately, common example of a case of brief complex partial seizures leading to dramatic social isolation. Laxer KD et al. Epilepsy Behav. 2014;37:59

13. © 2016 Direct One Communications, Inc. All rights reserved. 13 Consequences of Untreated Epilepsy Physical consequences » Mortality, including sudden unexpected death in epilepsy (SUDEP) » Injuries, including fractures Psychosocial consequences » Depression » Reduced quality of life » Unemployment » Social stigma Economic consequences » Increased healthcare cost

14. © 2016 Direct One Communications, Inc. All rights reserved. 14 Strategies to Raise Awareness A multipronged approach must be used to raise awareness of the symptoms, risks, diagnosis, and treatment of epilepsy. Every effort should be made to educate medical professionals on the epilepsy spectrum and particularly about non-motor manifestations of the disease. Healthcare professionals may use the Diagnostic Interview Conducted Outside Video EEG Recording (DISCOVER) form to standardize data-gathering and maximize the chances of detecting previous complex partial seizures and simple partial seizures.

15. © 2016 Direct One Communications, Inc. All rights reserved. 15 Strategies to Raise Awareness continued Reliable and professional epilepsy information must increase on the Internet and be more easily found. The epilepsy community needs to work with providers of search engines to optimize results for such search terms as “funny spells,” “déjà vu,” “dreaming while awake,” and others that patients often use when seeking information about epilepsy or the symptoms they have experienced.

16. © 2016 Direct One Communications, Inc. All rights reserved. 16 Conclusions There is an urgent need to raise awareness about epilepsy in general and complex partial seizures in particular; unfortunately, both patients and medical professionals lack awareness about these important medical events. Unrecognized seizures cannot be treated; if left untreated, epilepsy may result in loss of QOL and potentially serious consequences. We are in a unique position today of being able to use mass communication and social media with relative ease to rapidly and effectively disseminate information, raise awareness of epilepsy and its consequences, and more efficiently treat and follow our patients.