The Psychosocial Burden of Epilepsy
Epilepsy is a disorder associated with significant psychological and social consequences for everyday living (1). People with the condition report a significant impact of epilepsy and its management in terms of family dysfunction, reduced social and leisure opportunities, and increased levels of anxiety and depression and poor self-esteem compared with people without the condition (2). A central feature of the condition is its stigmatising nature (3). A number of studies have reported that the quality of life of people with epilepsy can be severely compromised by statutory conditions on driving and employment and by limitations in insurance provision, causing problems for well-being and independent living (4). Recent studies have, however, shown that people with well-controlled seizures are less likely to report psychosocial problems, and people in seizure remission (>2 years seizure free) report a quality of life not significantly different from those without the condition (5). Most of the evidence for the psychosocial problems associated with epilepsy has been drawn from studies in developed countries; in comparison, relatively little is known about the situation of people with epilepsy in developing countries. This is partly explained by the lack of resources available to conduct such research. A number of small studies have shown that attitudes toward and beliefs about epilepsy are largely pejorative, explained to some degree by the notion that the condition is infectious or the outcome of possession by evil spirits. Opportunities for marriage and employment are likely to be substantially worse for people with epilepsy in the developing world than for their developed world counterparts. The unpredictability of the nature and course of epilepsy is a key factor in the psychosocial handicaps it engenders for people in whom it develops. For centuries and across countries, epilepsy has been a condition with extremely negative connotations, and even now, the label of epilepsy is often rejected by those with the condition. I draw evidence from published research to highlight what is known about the psychosocial consequences of this condition and the contribution physical, social, and psychological variables make to its impact on the quality of life of those affected in both developed and developing countries. Epilepsy is a disorder characterised by loss of control (6). For many people with the condition, seizures may occur at any time with little or no warning. The constant threat of a sudden unpredictable loss of control has been thought to compromise a fundamental facet of the condition. Beliefs about the unpredictability of the condition appear to render individuals susceptible to psychopathology. Recent research has documented that people with epilepsy are more likely to experience anxiety, depression, and low self-esteem (7). People with epilepsy are more likely to be un- or underemployed, and lower rates of marriage and greater social isolation have been noted in adults when compared with others (2). Hermann and Whitman (8) hypothesised three alternative groups of variables that contribute to understanding the impact of epilepsy: psychosocial variables such as fear of seizures, perceived stigma, and discrimination; degree of adjustment to the diagnosis; other life events and level of social support; neuroepilepsy variables such as age at onset, duration of epilepsy, seizure type, and seizure severity; and medication variables including medication type and number (Fig. 1). The factors likely to influence the impact of epilepsy. Unravelling the relative contributions of these three groups has been difficult. However, synergistically they help us to understand the overall impact of the condition. Empiric investigation has so far tended to focus on the role of clinical variables, but there is evidence that both antiepileptic medication (AEDs) and psychosocial factors also play an important part in the development of psychopathology (2,6). The model proposed by the authors is useful in understanding the impact of epilepsy on day-to-day functioning of people with epilepsy in both the developed and developing countries. From the research conducted in the developed countries, it is evident that seizure control is a significant factor in determining the impact of epilepsy. Table 1 clearly highlights that people with epilepsy are much more likely to report that the condition has a negative effect on aspects of their lives if they are having continued seizures, as opposed to being seizure free. A Europe-wide survey (5) of 5,000 people with epilepsy who were identified through epilepsy support groups found that large percentages of respondents felt that epilepsy and its treatment significantly affected their perceived health status (see Fig. 2). In Fig. 2, the y-axis is a measure of their health, and scores range from 0 to 100 (100 being perfect health). The x-axis represents the different domains of health status. The profiles are substantially better for people who had been seizure free in the last 12 months compared with those with active epilepsy. Perceived health status by seizure frequency (5). A limitation of this study is the potential bias associated with the source of the samples and the relatively low response rate. Nonetheless, it represents one of the largest studies of the kind among people with epilepsy, and the results parallel those from a study of a smaller but unselected sample of individuals with active epilepsy (2). At their most extreme, the neuroepilepsy variables such as seizure type and frequency are associated with increased mortality, those with frequent and generalised seizures having a standard mortality rate much higher than those with infrequent seizures of other types (9). The incidence of accidents and trauma also is much higher in this group; for example, people with seizures are twice as likely to die of drowning than are people without them. Recent research has highlighted that the risk of nonfatal injuries, including fractures and burns, also is higher for people with epilepsy than for others (10). Less dramatically, people with epilepsy have to contend with the side effects of AEDs, which may be both cognitive and physical. Side effects may be more common with polytherapy and are apparently less common with the newer drugs, although it has been suggested that this is no more than a reflection of the fact that they have been less well investigated. It has been argued that all major AEDs have adverse cognitive effects, including reduced attentiveness, impoverished memory, and mental slowing, and those patients with more cognitive impairment also have more psychosocial problems (11). Reviewing the studies of the psychosocial consequences of epilepsy, one major reoccurring theme is that epilepsy is a stigmatising condition. To understand stigma, it is important, however, to differentiate between perceived and enacted stigma. Perceived stigma refers to an individual's perception of being stigmatised, whereas enacted refers to the actual event of being stigmatised. In developed countries, there is significant evidence for the former but little evidence for the latter. Interestingly, in a recent study, the author (12) found significant variations across Europe for levels of perceived stigma, highlighting the importance of providing a cultural perspective for this concept. The results of this study are portrayed in Fig. 3. Cross-cultural differences in stigma. Percentage of patients reporting feeling stigmatised by their condition (12). Evidence from a significant number of studies confirms that epilepsy is associated with increased levels of psychological morbidity, including anxiety and depression, low self-esteem, and a reduced sense of mastery. Undoubtedly this increased psychopathology can be attributed partially to other psychosocial variables including fear of seizures, reduced social support, and stigma. The psychosocial variables also may explain the social withdrawal and isolation that is commonly reported among people with epilepsy and often is the product of anxiety about the hostile reactions of others if a seizure occurs in public. Such fear can lead to self-denial of opportunities that can in turn result in a whole host of problems with personal relationships. These problems may be reflected in lower rates of marriage and fertility reported by people with epilepsy compared with those of the general population. The psychosocial variables also may partly explain both under- and unemployment, which has shown to be twice as common in people with epilepsy, and lower rates of academic achievement. Most of the evidence for the impact of epilepsy has been drawn from studies in developed countries, and in comparison, relatively little is known about the situation of people with epilepsy in developing countries. Unfortunately, there is a scarcity of evidence concerning the relation between the impact of epilepsy and the neuroepilepsy variables. There are few if any published data of the mortality associated with epilepsy, nor are there any significant published data on accident rates. However, anecdotal evidence has suggested that certainly in African countries, epilepsy is often referred to as the “burn disease” because of the many patients with epilepsy being referred for treatment of burns caused by falling into a fire during a seizure. There also is little known about the side effects of medication, and this is not surprising, given that a significant proportion of people with epilepsy will not have access to AED treatment but will be treated by traditional healers (13,14). The prevalence of psychological or psychiatric morbidity remains unknown. However, it is reasonable to assume that uncontrolled seizures and stigma may result in similar psychological repercussions as those for people with epilepsy in developed countries. A number of relatively small studies conducted in Africa, South America, India, and Pakistan confirm that epilepsy has a disruptive impact on daily lives of those with the condition (15–17). A review of the literature from developing countries has suggested that people with epilepsy experience problems with education, marriage, social isolation, and employment. A study recently conducted in Africa highlighted the problems of family members having to care for the person with epilepsy when all hands were needed to manage the demands of making a living. The evidence to date is that in both the developed and developing countries, epilepsy is perceived as stigmatising. What might be different is the level of enacted stigma. Reports from studies conducted in Nigeria, Africa, and Kenya show that people with epilepsy are discriminated against on the grounds that epilepsy is considered to be infectious. In a recent study by Shorvon and Farmer (14), the authors collated information about what the general public believed were the causes of epilepsy. Their findings suggested that in the developing country, beliefs about the causation of epilepsy are less to do with disorders of the central nervous system and more to do with spiritual, environmental, and psychological causes (see Table 2). It is interesting to reflect that these ideas were prevalent in developed countries less than a century ago! If we return to the model proposed by Hermann and Whitman (8) and consider both the developed and developing countries, we might discover that the three sets of variables (neuroepilepsy, medication, and psychosocial) might contribute to the impact of epilepsy, but the weight attached to them varies. This obviously has implications for any future rehabilitation programmes and campaigns such as the global campaign. In summary, epilepsy is a stigmatising disorder, and epilepsy per se can and does have a significant impact on the day-to-day functioning of those with the condition. The importance of understanding the cultural differences when considering the implementation of rehabilitation programmes and considering educational programmes that can be delivered at local, national, and international levels should not be underestimated (13,18,19).