Goals of Therapy

Lawrence J. Hirsch

Timothy A. Pedley

Introduction

The goal of all medical therapy is to allow patients to live as normally as possible and to maximize quality of life, especially health-related quality of life. For patients with epilepsy, the desired goal is “no seizures, no side effects,” as emphasized in a National Institutes of Health–sponsored consensus conference in 2000.¹² The availability of a number of newer antiepileptic drugs (AEDs) has helped us to reach this goal, particularly in terms of “no side effects.” Unfortunately, there has not been a comparable benefit in the number of patients who become seizure free.²⁵

General Aspects of Treatment

Having epilepsy commonly introduces several consequences that are relatively unique, including restrictions on driving, persistent stigma, and the small but real possibility of sudden death. There are also more subtle issues that affect the quality of a patient’s life but can easily be overlooked, even in patients who are seizure free and who seem, on first glance, to be free of adverse effects as well. These include undesired chronic effects of AEDs on cognitive ability, mood, weight (both gain and loss), childbearing, and sexual function. Epilepsy can cause cultural and financial stress, and some AED regimens can be inconvenient and threaten compliance. Such issues are just as important, and can be as complex, in patients with mild epilepsy (or even a first seizure) as they are in those with intractable seizures. For these reasons, it is ideal for all patients who have seizures or epilepsy to be offered an opportunity to consult with an epilepsy specialist.

Successful management of patients with epilepsy requires treatment to be individualized. This can only be achieved if the physician, patient, and family cooperate in a productive partnership. It is useful early on to determine the relative importance the patient attaches to several possible outcomes and then to reevaluate these from time to time during the course of treatment. For a patient who has strong objections to taking medication, it is best to choose the simplest possible regimen with the least risk of side effects. Other reasonable considerations might include, as appropriate, reduction in dose or consideration of AED withdrawal, even if the chance of success is low. Another patient may view the possibility of an additional seizure as sufficiently devastating that he or she will not tolerate even a small risk of recurrence despite the potential benefit of lower doses or discontinuing medication altogether. The reasons may be psychological, professional, social, or practical (e.g., a compelling need to drive).

Although family members who accompany patients can be helpful in providing details and circumstances of ictal events, additional details of the family’s history, and information about the patient’s infancy and childhood, it is essential for the physician to meet privately with the patient at some point, even if this has not been specifically requested. Privacy encourages most patients to raise questions and express their concerns and also to discuss potentially sensitive issues such as alcohol, drugs, and sex. On rare occasions, patients may express unease about their caregivers, whose motives may not always be in a patient’s best interest. For example, a caregiver in a group home might report that a patient’s behavior has worsened and become problematic after a sedating medication has been stopped. In reality, the patient might be more alert and interactive but now also requires more attention.

Patients’ reports of their seizures are notoriously unreliable. Blum et al.⁵ determined seizure awareness prospectively in 31 patients admitted to an epilepsy monitoring unit (EMU). Twenty-three patients had epileptic seizures, but only 26% of them were aware of all of their seizures (regardless of seizure type), and 30% were not aware of any. Similarly, Eisenman et al.¹¹ found that self-reports of seizure frequency did not correlate with time to first recorded seizure in the EMU. Patients with infrequent seizures, averaging <2.2/month by history, and those who reported frequent seizures, averaging >24.1/month, both averaged 2 to 3 days to record the first seizure. Furthermore, even when patients recall their spells, details regarding impairment of consciousness are unreliable. Regularly obtaining collateral information from spouses, partners, or other close family members can add important information and improve historical accuracy. The foregoing data also suggest that having a low threshold for prolonged electroencephalogram (EEG) monitoring (either ambulatory or inpatient) is frequently necessary to resolve ambiguities or inconsistencies in the history and obtain a more accurate account of the patient’s condition.

What do patients care about the most?

Previous work has shown that patients with epilepsy have many health-related quality of life concerns, and these frequently involve issues related to a desire for greater independence (especially in terms of driving, work, and social life), less stigmatization, improved mood and cognition, absence of drug-related adverse effects, and, of course, complete control of seizures.⁹^,¹⁵^,³⁹ Although seizure control without AED side effects is an important determinant of quality of life, other factors are also significant. Moreover, many of these may be amenable to educational or therapeutic interventions, resulting in improved quality of life even without a concomitant reduction in seizure frequency or severity.

There is convincing evidence that depression is a common comorbid condition in patients with epilepsy¹⁴ and that the presence or absence of depressive symptoms might outweigh the impact of controlling seizures in determining the patient’s perception of well-being⁶^,²¹(see also Chapter 205). Depression also influences how patients perceive their seizures. In a survey that assessed self-reported seizure severity and the burden of seizure components, respondents with moderate or severe depression reported significantly worse problems than did those
without depression in terms of overall seizure recovery, overall severity, and overall seizure burden (all p <.005). Cognitive, emotional, and physical aspects of seizure recovery were also rated worse among people with severe depression compared to those without depression (all p <.05).⁷ (See Chapter 199 for an overview of psychiatric issues in epilepsy.)

Several studies have shown that individuals with frequent and more severe seizures have a significantly poorer quality of life than those with infrequent or no seizures.³^,⁴^,²⁰ Adverse events related to AEDs are also detrimental to quality of life. On the basis of a U.S. survey of >1,000 persons with epilepsy, Fisher et al.¹³ concluded that “only 68% of respondents were very satisfied with their current seizure medications.” Patients ranked seizure control, fewer side effects, convenient dosing regimens, and cost from most to least important. (See Chapters 100 and 220 for further discussion of quality-of-life and outcome scales.)

Driving

For most people, driving is a surrogate for independence, and freedom to drive is therefore a major contributor to quality of life.¹⁵ Thus, it is not surprising that issues related to driving are among the most difficult routinely encountered in the care of patients, especially those with mild epilepsy. Recommendations must balance a physician’s dual obligations—to the patient and also to society. Although advice must conform to applicable statutory requirements, it should, to the extent possible, be tailored to the circumstances of the individual patient.

Fortunately, fatal crashes due to seizures are rare. Between 1995 and 1997, only 0.2% of all driving fatalities in the United States were attributed to seizures in mortality reports. Although patients with epilepsy had a greater rate of fatal crashes than those with other medical conditions, occurrence of fatal seizure-related crashes was 2.6 times lower than in the general population.³⁶

Many factors can influence a patient’s risk for seizure recurrence and, therefore, the risk of seizure-related motor vehicle accidents. Seizure-free interval has been widely adopted by regulatory agencies as a practical measure of driving risk. A consensus statement from the American Academy of Neurology (AAN), the American Epilepsy Society (AES), and the Epilepsy Foundation of America (EFA) advocated a 3-month seizure-free interval, with allowance for modifiers that might extend or shorten the interval¹ (see Chapter 221 for more details). Drazkowski et al.¹⁰ reported that in the state of Arizona, seizure-related crashes did not increase significantly when the seizure-free interval required before driving was allowed was reduced from 12 to 3 months. Krauss et al.²² found that the following factors were associated with a significantly decreased risk of motor vehicle crashes due to seizures: (a) a seizure-free interval of >6 to 12 months (which is in contrast to the Drazkowski data); (b) the presence of reliable auras (although some patients still had crashes, possibly related to a later finding that some of the “auras” were actually complex partial seizures); (c) no or few prior accidents that were unrelated to seizures; and, unexpectedly, (d) switching or reducing AEDs. Given that 25% of patients with crashes had more than one seizure-related crash, patients with previous crashes due to seizures are likely to be at particularly high risk. Recommendations based on these findings are shown in Table 1.

Only gold members can continue reading. Log In or Register to continue