Obstacles to Epilepsy Diagnosis

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

Epilepsy is more prevalent among the US population than many other common neurologic diseases combined, yet diagnosis of epilepsy and other seizure disorders is hampered by a number of barriers. During the 69th Annual Meeting of the American Epilepsy Society, experts in the clinical management of epilepsy discussed factors linked to delayed diagnosis, problems related to untreated seizure disorders, and ways to increase awareness of the disease and its varied manifestations among patients and healthcare professionals.

Pawan V. Rawal, MD, MHAEpilepsy is one of the most prevalent noncommunicable neurologic conditions, affecting almost 70 million people worldwide.1 In the United States, it is the fourth most common neurologic disease after migraine, stroke, and Alzheimer's disease.2 However, its diagnosis often is delayed because many clinicians and patients are not sufficiently aware of its various presentations. In fact, when the first event is a simple partial seizure, the average delay in epilepsy diagnosis could be more than a year.2

During the 13th annual Judith Hoyer lecture in epilepsy presented at the 69th Annual Meeting of the American Epilepsy Society, Jacqueline A. French, MD, Professor of Neurology and Director of Translational Research and Clinical Trials in Epilepsy at NYU Langone Medical Center in New York City, discussed the barriers to epilepsy diagnosis and ways that these obstacles can be addressed.

Over a lifetime, ~ 1 in 26 people in the United States will be diagnosed with epilepsy.3 The prevalence of epilepsy is higher than that of autism, amyotrophic lateral sclerosis, cerebral palsy, multiple sclerosis, and Parkinson's disease combined, with an estimated 150,000 patients newly diagnosed each year in this country.4 Epilepsy causes an estimated 26% of the burden of neurologic disorders calculated in disability-adjusted life-years (DALYs). Laxer and colleagues5 noted that 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 for prostate cancer.

Although epilepsy is fairly common and affects all patients of all ages and socioeconomic classes, its awareness among the general public 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. In developing countries, the treatment gap is more profound.6 One study in rural Bolivia estimated that approximately 2 in 10 patients with epilepsy went to physicians during their lifetimes, and only 1 in 10 used an antiepileptic drug (AED) for more than 2 months.7 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 significantly delays diagnosis and treatment.

To effectively address the problem of lack of awareness, contributing factors must be understood. Patients with epilepsy who have not been diagnosed usually fall into one of three broad categories: (1) patients who never thought to ask, (2) those who wanted to ask but did not know where to start, and (3) those 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. Further, 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 half of individuals with epilepsy,8 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 for medical information. Searching the Web for medical diagnoses involves several limitations, even though an increasing number of patients are using Internet search engines.9 The words that patients use to search the Internet for epilepsy symptoms make a big difference. For example, on a simple Google search, the results for "leg numbness" are much more relevant to a diagnosis of epilepsy than are the words "funny spells." Further, a search on the popular patient website WebMD for the words "strange episode" resulted in articles on implantable cardioverter-defibrillators, schizophrenia, Lyme disease, and multiple sclerosis. None of the top-10 search results on Google suggested epilepsy as a possible cause. 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.

A patient who feels trapped in a thought may be evaluated using electroencephalographic (EEG) data and 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. In some cases, patients may be diagnosed with complex partial seizures, and use of just one AED could free the patient from seizure activity. Unfortunately, epilepsy (particularly complex partial seizures) is often underdiagnosed, even by neurologists.10 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.

The Human Epilepsy Project (HEP)
Important information on the magnitude of delay in diagnosing and treating seizure disorders has been offered by the Human Epilepsy Project (HEP), a multicenter, prospective, observational study that is collecting clinical, imaging, and laboratory data on patients with focal epilepsy. Hennessy and colleagues2 presented data on 206 patients suggesting that complex partial seizures and simple partial seizures adversely affect the recognition of epilepsy. Among 206 patients who initially presented with a secondarily generalized tonic-clonic convulsion (SGTCC), a median of ~ 4 days elapsed before treatment began. On the other hand, those who presented with at least one complex partial seizure and/or simple partial seizure did not begin AED therapy for a median of 200–400 days (Table 1).2 Among patients having simple partial seizures and/or complex partial seizures initially, treatment delays led to even more seizures before therapy began.2

Table 1

Table 1

Of 66 patients whose first seizure was an SGTCC, 28 patients (33%) experienced a delayed start of therapy, as compared with 45 patients (76%) with complex partial seizures and 48 (86%) of those with simple partial seizures.2 More than half of the treatment delays among patients initially having complex partial seizures were attributed to an inability of the patient and/or physician to recognize the seizure (Table 2). For patients first having 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.2 Obviously, there is an urgent need for patient and physician education to facilitate prompt diagnosis and treatment of both simple and complex partial seizures.

Untreated epilepsy may have a huge impact on a patient's personal, professional, and social life.5 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. Table 3 highlights some of the consequences of untreated epilepsy.

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. This structured interview may be used to ensure that crucial questions about these seizure episodes (among others) are asked.

Further, 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," and others that patients use when seeking information about epilepsy or the symptoms they've experienced.

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. If seizures are not recognized, they cannot be treated. If left untreated, epilepsy may result in such potentially serious consequences as sudden unexpected death in epilepsy.

Today, we are in the unique position of using mass communication and social media such as Facebook to rapidly and effectively disseminate information, raise awareness of different epilepsy types, and more efficiently treat and follow patients with seizure disorders. Neurologists need to use these modern communication methods to their greatest advantage.


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Dr. Rawal is Assistant Professor of Neurology, University of Tennessee Health Science Center, Memphis, Tennessee.

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