Leading the Way to Better Epilepsy Care Through Expert Consensus

Neurologists obviously diagnose and evaluate patients with epilepsy with great frequency. Perhaps because of the regularity with which they deal with the disease, self-reflection is common. Clinicians may wonder whether they order the proper tests, if they are choosing the right agents, or if different therapeutic approaches are indicated for particular patients. To help clinical neurologists—as well as general practitioners and others who may manage epilepsy—feel more confident in their approaches and improve standards of patient care, 26 epilepsy specialists recently published "Core elements of epilepsy diagnosis and management: Expert consensus from the Leadership in Epilepsy, Advocacy, and Development (LEAD) faculty."¹ Among recommendations offered in the consensus guidelines are core components of patient diagnosis and evaluation, core questions for assessing a seizure, diagnostic tests to obtain, considerations for AED selection, strategies for long-term management, and guidelines for assessment of comorbidities.

Achieving Consensus
Describing the LEAD consensus guidelines at a briefing during the American Epilepsy Society Meeting last month, lead author and LEAD faculty co-chair Tracy A. Glauser, MD noted a need for "universal standards necessary to ensure consistency" in epilepsy care. He pointed out that while there are an estimated three million people with epilepsy in the US, there are few specialized clinics, and according to responses to a CDC survey, more than one-third of patients with epilepsy have not been seen by a neurologist in the past 12 months. The new consensus document resulted from a survey of the 26 LEAD faculty members, who responded to 105 questions about epilepsy diagnosis and patient evaluation, treatment decisions, lifelong monitoring, and management of special patient subgroups.¹ Questions were posed in both multiple choice and open-ended formats. When a majority of respondents (defined as 50 percent plus one) selected the same response, a consensus was reached.

The new publication is a "one-stop resource" for clinicians caring for epilepsy patients, says John M. Stern, MD, a faculty member who says the goal of the enterprise was "not to create an algorithm, but rather to consolidate existing recommendations." The level of agreement among respondents was often "quite striking," according to Dr. Stern, who notes that in many cases, 75 percent or more of respondents concurred with recommendations.

According to Mark C. Spitz, MD, another faculty member, "It often came to what I thought was very strong agreement." Given the diversity of the panel in terms of geographic location, training, and specialization, the level of consensus is particularly noteworthy, he says.

Stressing that the goal of the survey was to highlight areas of agreement rather than ignite controversy, Dr. Stern says he was nonetheless surprised by the degree to which the faculty agreed on some points. Among these, he says he finds it noteworthy that the panel unanimously urged questioning about possible seizure triggers as well as about the occurrence of aura in association with the seizure. "Direct questioning about auras is not as common as the panel thought it should be," he said.

Dr. Stern notes that readers of the report may be surprised by the faculty's overwhelming support for the use of MRI, favored by 81 percent of respondents (65 percent of respondents specified MRI with epilepsy protocol). This is in addition to the EEG, advocated by 100 percent of the panel.

Dr. Spitz also highlighted the significance of the MRI recommendation, noting that many general neurologists and non-neurologists may not routinely order MRIs for seizure patients. Many epilepsy patients will have had a CT scan—usually because they presented to an emergency department in the wake of a seizure, and emergency staff ordered the scan, which is readily available, relatively inexpensive, and rapidly administered, to rule out an obvious anatomic cause for seizures, such as a tumor or vascular malformation. "The goals of an emergency medicine physician are really different from the goals of a neurologist or epileptologist," Dr. Spitz maintains. "In contrast, a neurologist or epileptologist is more interested in the long term quality of life of the patient, the Ôbigger picture,' so to speak." MRI provides a degree of sensitivity that CT lacks and may help a specialist better understand the disease process, he explains. For example, evidence of mesiotemporal sclerosis (MTS) may not be evident on CT but can be seen on MRI.

Specific information gleaned from an MRI can be useful for multiple reasons, according to Dr. Spitz. Findings of MTS or cortical migration defects allow the clinician to give the patient or family a "reason" for epilepsy and may influence therapeutic selection. Identifying anatomic abnormalities amenable to surgical treatment would lead to earlier consideration for surgical therapy.

Emphasis on Questioning
Imaging is important, of course, but the medical history always has provided information essential to accurate diagnosis. In fact, prior to the emergence of imaging modalities in recent years, it was the most important diagnostic tool, Dr. Spitz reminds. The patient's medical history, therefore, remains crucial in diagnosis of epilepsy, Dr. Spitz maintains, but it may be overlooked. One reason for this, he says, is that a patient's self-report of seizures is notoriously unreliable due to his or her altered awareness during the seizure event.

The patient will almost certainly receive reports of the event from family, friends, or caregivers present at the time of the seizure, but these tend to emphasize what's "dramatic, and not necessarily what's helpful to the physician," Dr. Spitz observes. Upon direct questioning, however, witnesses usually can recall details that may prove useful to the evaluating physician. This person may have seen the patient stare, noticed a subtle twitch a few seconds prior to the seizure, or recall how the patient fell or jerked.

Given that many individuals who experience a seizure have been advised or opt not to drive until seeing a specialist, a reliable witness will often have accompanied the patient to the office. In the case of a pediatric patient, a parent is almost always present. If a witness is not present, consider calling a witness to acquire information, Dr. Spitz says. Most people have cell phones. Therefore the patient can immediately contact an eye witness to acquire information. "When we limit our questioning to the patient, we as physicians are relying on hearsay too much of the time, and we don't have to," Dr. Spitz argues.

Beyond diagnosis, patient questioning can prove useful in therapeutic selection, Dr. Spitz says. "The way that we select therapies has to do with concomitant medical problems that a detailed medical history will bring out." For example, he says, 20 percent of patients with epilepsy also have migraines. Such individuals are candidates for an AED that has also been approved for migraines and must avoid those medications that could actually exacerbate headaches for initial treatment considerations.

Dr. Spitz believes questioning about education and social background during the initial evaluation is essential—a belief shared by a significant proportion of LEAD faculty members. Such information is "important to help us as physicians to treat the patient better as a person and educate him or her more meaningfully," he says. The patient's level of education and/or anticipated medical knowledge will influence education efforts and discussions about the disease and its management.

Knowledge of the patient's economic status and insurance coverage can impact therapeutic decision making. "Even though ideally we want to put the patient on the medicine that from a theoretical medical perspective is best for them, the reality is that in some cases the patient may not be able to afford it," Dr. Spitz says. When costs are prohibitive, generics may be the patient's best option.

Getting to know the patient on a level beyond their presenting medical condition and involving him or her in therapeutic decision making can also improve therapeutic adherence, argues Dr. Stern. "Patients who have a great sense of empowerment are more likely to be adherent," he says.

Noting that generics can introduce a new variable into treatment, Dr. Stern encourages frank discussion of finances and the role of generics as part of the treatment plan. When it comes to the use of generics, he says, there can be no Level One evidence, given the lack of clinical trials.

Core Elements in Practice
Both Dr. Stern and Dr. Spitz are hopeful that physicians will find the recent publication to be a useful tool in their practices and that it will help to improve the quality of care that patients receive. "Obviously what we want to do is give our patients the best treatment available," Dr. Spitz says.

The recent publication, published in a peer-reviewed journal, can play an important role in decision-making, Dr. Stern suggests. "I'm hoping that physicians will read it and pay attention to it," Dr. Spitz says. Both physicians note that the guidelines are intended to promote thoughtful assessment and decision-making of each specific case and perhaps encourage further discussion within the specialty. "It's important to look at the whole patient and devise a thoughtful plan instead of following a quick and dirty algorithm," Dr. Spitz concludes.

1. Glauser TA, Sankar R; Co-chairs of the Leadership in Epilepsy, Advocacy, and Development Faculty. Core elements of epilepsy diagnosis and management: expert consensus from the Leadership in Epilepsy, Advocacy, and Development (LEAD) faculty. Curr Med Res Opin. 2008 Dec;24(12):3463-77.