Quality of Life in Epilepsy

Beyond Seizure Counts in Assessment and Treatment

Gus A Baker, Gus A. Baker, Ann Jacoby, Gus A Baker, Gus A. Baker, Ann Jacoby

• Publisher: Psychology Press
• Year: 2013
• ISBN:
  9781134960897
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Though clinical aspects of epilepsy such as seizure control are crucially important to its management, increasing attention is being given to wider quality of life issues. Epilepsy continues to be an often misunderstood and stigmatising condition; for the vast majority of people whose seizures can be well controlled, the social and psychological repercussions are often of greater significance than the seizures themselves.
The increasing emphasis on the importance of non-clinical outcomes in the assessment of new treatments and management strategies for chronic conditions such as epilepsy has stimulated interest in methodological issues in assessing quality of life. This book reviews the recent literature on the impact of epilepsy on everyday experience and the methodological issues involved in assessing that impact. It also considers the perspectives of a range of health professionals involved in caring for people with epilepsy and how, through appropriate management, the impact on their lives can be minimised.

Chapter 1

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THE PROBLEM OF EPILEPSY

Ann Jacoby and Gus A. Baker

Though known as ‘the sacred disease’ to the ancient Greeks, epilepsy has much more often been associated with negative and pejorative imagery. Across time and different cultures, it has variously been viewed as the outcome of sin, as the product of demonic possession and as a form of madness, and consequently as a condition to be feared and rejected. The treatment of people with epilepsy throughout history has been a reflection of this. Legal and statutory restrictions on people with epilepsy are centuries old and universal and surveys of public opinion carried out during this century suggest that the ancient myths and superstitions about the nature of epilepsy still linger (Dell, 1986). Given the historical reality of epilepsy, it is not surprising that people with epilepsy continue to regard their condition as potentially, if not actually, stigmatising and to report that it has a fundamental impact on their quality of life.

Another defining quality of epilepsy is uncertainty. A person with epilepsy faces a whole range of clinical uncertainties, over the diagnosis, over whether and when seizures will occur, over the nature of seizures and how best they can be controlled and over whether or not they will ultimately remit. Living with a diagnosis of epilepsy involves managing that clinical uncertainty by balancing available options and possible choices, including over the matter of treatment. The unpredictability of the nature and course of epilepsy is a key factor that impacts on the quality of life of people who develop it.

There is a substantial literature documenting the various ways in which the socio-historical and clinical realities of epilepsy affect the lives of those living with it. Epilepsy is known to be associated with increased mortality and morbidity, impaired psychological functioning and reduced social functioning. The diverse ways in which the impact of epilepsy is felt means that people with epilepsy find themselves in ‘a particular predicament’ (Taylor, 1989) to which they must somehow adapt and adjust. The diagnosis of epilepsy involves learning to cope with the physical impact of seizures and the medications prescribed to control them; with the limitations imposed by statute, which may have major implications for social functioning and employment; with the limitations imposed by prejudice, fear and lack of understanding by others; and with the impact on the psyche. Not surprisingly, this challenge proves easier for some people than others.

THE CLINICAL REALITY OF EPILEPSY

Epilepsy is one of the most common neurological disorders, with an age-adjusted incidence of between 20 and 70 per 100,000 and a prevalence of 4 to 10 per 1000. It is estimated that around 50 million people have epilepsy world-wide, with rates somewhat higher in the developing than in the developed world (Bharucha and Shorvon, 1997). Epilepsy is no longer seen as a single disorder, but a group of disorders in which seizures recur. Understanding that this is the case has led neurologists to develop a classification of epileptic syndromes (ILAE, 1989) in which a range of factors including seizure type, neurological history, family history, age of seizure onset and aetiology are considered. The most important subdivision of the epileptic syndromes is between those with a recognisable cause, the ‘symptomatic’ epilepsies and those without, the so-called cryptogenic or idiopathic epilepsies. It is often a cause of considerable frustration and distress to people with epilepsy that in around 60–70% of cases, there is no identifiable cause for epilepsy (though a number of main causes have been identified for both children and adults). On a more positive note, they can take comfort in evidence from recent epidemiological studies that suggest that for most people with epilepsy, the outlook is excellent. Around 70–80% of those newly diagnosed with epilepsy will enter remission shortly after embarking on antiepileptic treatment (Sander, 1993).

Another aspect of epilepsy which surprises many lay people, both with and without epilepsy, is that there are many different types of epileptic seizure. The classification discussed by Leach and colleagues in Chapter 2 divides seizures into two groups: partial seizures, in which only one hemisphere of the brain is involved; and generalised seizures, where there is no evidence of localised onset. Seizures can also be differentiated according to whether or not they involve any alteration or impairment of consciousness. Because different seizures manifest themselves so differently, they also vary in the degree to which they present a risk to physical safety, their predictability, their responsiveness to treatment and their stigma potential; and so in relation to the views of those experiencing them about the degree of their severity.

For clinicians treating individuals who present with possible seizures or epilepsy, there are a number of fundamental definitional difficulties. These include: what constitutes a seizure; which seizures should be considered in the diagnosis of epilepsy; whether or not a first or single seizure constitutes epilepsy; whether someone whose seizures recur only rarely should be considered as having epilepsy; and whether a person whose seizures are in long term remission still has epilepsy. All these questions are debated at some length in the key medical texts on epilepsy. The important point here from the viewpoint of the person concerned is that these definitional uncertainties mean that clinicians decide under what circumstances the label ‘epilepsy’ should be applied largely on the basis of clinical observation and interpretation.

Historically, treatment for seizures and epilepsy has included exorcism and the invoking of the gods, blood letting, purging, dietary restrictions, herbal remedies and surgery. It could be argued that therapy reached a somewhat more sophisticated level after the use of bromides was introduced in the mid-1850s. The first ‘modern’ antiepileptic agent was developed in the last century, called phenobarbitone because it was first synthesised on St Barbara’s Day in 1864 (Scott, 1993). Currently antiepileptics constitute the major treatment approach, with four novel agents licensed for use in the UK over the last eight years. The advent of the new antiepileptics has shifted neurological thinking away from the view that polytherapy is almost always undesirable to one of the possibility of drug combinations with ‘synergistic properties’ (Chadwick, 1994). The vexed questions of whether and when to start antiepileptic drug treatment are considered by Leach and his colleagues in Chapter 2. Available evidence suggests that following an initial unprovoked seizure, as many as 61% of affected individuals will experience a recurrence, with most second seizures occurring within a year of the first (Hauser and Hesdorffer, 1990). Reynolds (1995) has argued the case for early treatment on the grounds that epilepsy is a process with the potential to become intractable and early treatment reduces the likelihood of this happening. The counter-argument is that studies of specific epileptic syndromes suggest that antiepileptics may not have any real effect on clinical outcome (Chadwick, 1995). Given that there is a considerable body of research (presented in Chapters 2 and 3) into the adverse cognitive, behavioural other systemic and teratogenic effects of antiepileptics, it is important that people with epilepsy are given adequate information about them. They can then more realistically balance the costs of such effects against the possible psychosocial consequences of continuing seizures when deciding whether to start or stop treatment (Jacoby et al., 1992, 1993).

Recent developments in brain imaging mean that surgery is increasingly seen as a viable treatment option. It has been estimated that surgery could reasonably be offered to between five and 10% of people with focal epilepsy unresponsive to antiepileptic medications (CSAG, 2000). The clinical outcome for epilepsy surgery is good, with success rates approaching 70% (Engel et al., 1993). Successful surgery can also result in spectacular improvements in quality of life (CSAG, 2000 and see Chapter 6). However, it is clear that the one does not automatically follow from the other and the matter of surgical candidates’ expectations of their surgery figures large in the likely quality of life outcome (Wilson et al., 1998).

THE SOCIAL REALITY OF EPILEPSY

The view of epilepsy as first and foremost a social label, rather than a medical or organic certainty, is firmly routed in the work of writers such as Falk and Gorman (1972), Schneider and Conrad (1981, 1983), Scambler (1984, 1989) and West (1979, 1986). Central to the work of all these authors is the emphasis on the stigmatising nature of epilepsy and the status role of being an ‘epileptic’. The person with epilepsy is required to take on the whole history of its stigma, such that having epilepsy is seen as far worse than simply having seizures (Schneider and Conrad, 1983). In all these studies, beliefs about the social meaning of epilepsy impinged not just on the attitudes to its diagnosis of those affected, but also on their subsequent behaviour. Scambler (1989) reports that many people try to capitalise on the clinical uncertainty surrounding their condition to deny or renegotiate the diagnosis; and where unable to do so, opt to conceal it from others. Schneider and Conrad reported that the people in their study developed both preventive strategies to combat the likelihood of them having seizures and defensive strategies for occasions when they did so. Other family members too appear to make assumptions about the stigmatising nature of epilepsy (West, 1979) and may even take on the role of ‘stigma coaches’ to their relative with epilepsy.

Recent studies in the developed world have tended to present a less than favourable picture of lay attitudes to epilepsy. People with epilepsy are characterised in such studies as antisocial, excitable, aggressive and potentially violent, weak and physically unattractive (Vinson, 1975; Harrison and West, 1977; Scambler, 1983). Surveys in the developing world demonstrate that such negative views are held even more strongly and with more devastating effect (Adamolekun, 1999). Encouragingly, there is also evidence that public attitudes, in the developed world at least, are improving (Caveness and Gallup, 1980; Canger and Cornaggia, 1985; Jensen and Dam, 1992). Nonetheless, many people with epilepsy appear unconvinced and continue to hold the view that their condition is one against which prejudice persists (Scambler, 1989). This perception of the way they are viewed by others can, not surprisingly, have important implications for the psychological well-being of people with epilepsy. A number of studies have found a relationship between the degree to which those affected feel stigmatised by their epilepsy and reported problems such as anxiety, depression, self-esteem and life satisfaction (Arnston et al., 1986; Jacoby et al., 1996; Baker et al., 1997). Even among people whose epilepsy is in remission, feelings of stigma can persist (Jacoby, 1994), supporting Friedson’s (1970) view of stigma as ineradicable and irreversible. The finding that feelings of stigma are largely unrelated to any clinical features of epilepsy (Westbrook et al., 1992; Jacoby, 1994) only serves to emphasise the power of its social reality.

THE IMPACT OF EPILEPSY ON QUALITY OF LIFE

From the discussion so far, it should be clear that for the person so diagnosed, the problem of epilepsy is one with the potential to have a significant impact on quality of life. Some of the ways in which epilepsy impacts are common to all chronic illnesses (Turk, 1979; Bury, 1982, 1988; Conrad, 1990); others are the product of epilepsy per se. In Chapter 6, Hermann provides a detailed review of the many and diverse ways in which epilepsy has been shown to affect the quality of life of adults with the condition, at the level of their physical, psychological and social functioning. Chapters 7 by Dunn and Austin, 8 by Tallis and 9 by Espie and Kerr address quality of life issues as they pertain to children and adolescents, older people and people with complex epilepsy accompanied by learning disability. Among the most significant effects are, first, that it is associated with increased mortality, particularly among people with symptomatic epilepsy and those who have generalised seizures (Hauser and Hesdorffer, 1990). Second, epilepsy is associated with increased morbidit...