Epilepsy is a major clinical disorder with important social implications (Quintas et al., 2012) resulting in numerous challenges due to stigma, discrimination, low self-esteem, and so on. Although some of these issues have been widely investigated, many remain to be fully addressed. For instance, people with epilepsy (PWE) are known to face stigma, but whether, and to what extent, it negatively influences them (for example in terms of discrimination and the need for coping strategies) when they are making decisions about their lives, is less well defined. Quality of life (QOL) has also been extensively examined but, in most cases, not from the patient's point of view (Schipper et al., 1990). It is essential that patients themselves identify what affects their QOL, thereby minimizing interrater biases. Other factors such as stress, self-esteem (SE), discrimination, social support, and fear related to illness are thought to have some relation to epilepsy, but again they have been examined in only a fragmented manner (Collings, 1990; Eklund & Sivberg, 2003; MacLeod & Austin, 2003; Raty et al., 2007; McCagh et al., 2009). Understanding of these aspects is of utmost importance if we are to understand the individual patient's perceptions of epilepsy and its treatment. Lack of comprehensive information in these areas may delimit any prospective implementation of prevention and control activities. Although incidence and prevalence estimates are lower in Asia than in other low- and middle-income (LAMI) countries, there are plenty of other reasons that make epilepsy more important in Asia than other LAMI regions (Preux & Druet-Cabanac, 2005; Mac et al., 2007; Mbuba et al., 2008). Epilepsy in Cambodia continues to be investigated in a comprehensive manner, and about 86,000 people, on average (prevalence 5.8/1,000), have epilepsy (active plus inactive) (Preux et al., 2011; Bhalla et al., 2012). Plenty of possible opportunities as well as challenges have already been identified in this population (Bhalla et al., 2013). We conducted this population-based study to further develop our understanding of how people in Cambodia perceive epilepsy and its treatment. The objective was to elucidate self-esteem, fear related to epilepsy, discrimination, knowledge–attitude–practice (KAP), stigma, social support, and patient-perceived factors associated with quality of life (QOL) in Prey Veng Province, Cambodia.
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- Supporting Information
Many parameters that we assessed (fear, self-esteem, coping strategies) have been incompletely investigated, particularly in LAMI countries. However, their importance is well recognized, and it is crucial to elucidate how epilepsy is perceived in Asia.
Our questionnaires had very high internal reliability and content consistency, indicating that the ways in which we measured parameters using different constructs delivered reliable results. The questionnaires were put through several testing procedures: split-half model, KR20, and Spearman-Brown prophecy prediction. Split-half is an excellent measure when the questionnaire concerned is dichotomous (like ours) and two test administrations are unlikely or undesirable (Cohen & Swerdlik, 2002). High results on split-half indicate that its dichotomous nature was of no disadvantage to our questionnaires. Our split-half results were subsequently validated through KR20, with similarly high estimates. High estimates of our Spearman-Brown prophecy (no <0.83 for any questionnaire) indicate that our questionnaires had appropriate test length and number of questions and that many biases (irrelevant questions, multiscale responses that may artificially increase the reliability of a questionnaire, and no straightforward answer) may therefore have been overcome. Like all questionnaires, ours are also subject to biases related to test-taking skills, response time, ability to guess answers, conduct of the administrator, leniency error, and so on.
Many factors and situations, such as alcohol abuse or stress, may provoke seizures, as happens in 63–92% cases (Frucht et al., 2000). Stress is perceived to have both anticonvulsant (acute stress) and proepileptogenic (chronic stress) effects and has been reported to occur in both prospective and retrospective studies (Haut et al., 2003). Stress in our population was associated with seizures in about 14% of cases, which indicates that stress cannot be a universal precipitant of epileptic seizures, except for some patients, in Cambodia. All stressed individuals reported that reduction of stress reduced seizure frequency, thereby emphasizing the need to identify and counsel them. Focus on the mechanisms through which stress provokes seizures could elucidate epileptogenesis and possibly facilitate antiepilepsy treatment.
Stigma becomes particularly important when it actually affects someone with epilepsy. Theoretically, each person with epilepsy carries some degree of risk of being discriminated against in one way or another, but we noted that discrimination is not a universal phenomenon and only some PWE in Cambodia experience it. In our population, discrimination was greatest in relation to employment (or education among children); others concur (Jacoby et al., 2005a). Discrimination is not just a feature of LAMI countries alone and may vary in its nature or frequency (Jensen & Dam, 1992; Rhodes et al., 2008) across different regions. Discrimination is often believed to stem from negative beliefs such as considering epilepsy as contagious and shameful (Jensen & Dam, 1992; Sidig et al., 2009), or from insufficient knowledge among the public. Other studies in Western populations have reported the presence of attitudes and knowledge gaps that have the potential for encouraging discriminatory behavior (Jacoby et al., 2004). These are not necessarily sufficient explanations, as populations with high degrees of awareness and infrequent contagious beliefs still show high levels of discrimination (Sidig et al., 2009). We hypothesize that this may in fact be a result of genuine concern of others; for PWE, for instance, it may be a genuine concern to minimize the risk of injury while working. This seems more likely in a society, like ours, where social support for epilepsy cases and close social ties are almost a norm. The fact that social discrimination is the least frequent form in our population supports this premise. Further support can be deduced from the fact that nearly all controls reported being helpful when seeing someone having a seizure (Table 2). This underscores the importance of making society conscious of epilepsy (Souza et al., 2002) and promoting closer social ties and positive interpersonal relations.
Many factors that may reflect stigma were infrequent in our population; for instance, there was little tendency for denial and concealment, and isolation was a rare coping strategy. Most of the cases as well as the controls would have no objection to telling a friend he or she had epilepsy. This corroborates our premise that not all populations are likely to be stigmatized and not all populations are negatively influenced by stigma when making epilepsy-related choices. Elsewhere as well, it has been reasoned that stigma has been dealt with “obsessively” and there has been a tendency to overly justify many epilepsy-related parameters through stigma (Muela Ribera et al., 2009). Many studies from elsewhere have contradicted these results (MacLeod & Austin, 2003; Baker et al., 2005a; Hosseini et al., 2010) reporting, for example, concealment, intervention of God, and social withdrawal to cope with discrimination and stigma (Jacoby et al., 2005b; Hosseini et al., 2010).
Nearly one-fourth of our cases had some fear of damage or death due to epilepsy. Fears, such as that of premature death, brain damage, and so on, which we observed in our study, are also observed in other populations (Ward & Bower, 1978; Mittan, 1986; Austin et al., 1995). In our study, there was a statistically significant fear of premature death related to many factors (see relevant results section above) including fear of suffocation during seizures, fear of having more frequent/severe seizures over time, of having more seizures (>3) per month, and of having generalized seizures. Suffocation is an important cause of sudden unexpected death in epilepsy, more so for those having generalized seizures (Nashef & Ryvlin, 2009). This fear may arise due to incorrect body position or difficulties in breathing during the periseizure phase (Nashef & Ryvlin, 2009). Correlation between sudden unexpected death in epilepsy and seizure frequency/severity is also well recognized (Lhatoo & Sander, 2002). There was no correlation between epilepsy-related fears and treatment or its side effects. This is also in contrast to other reports (Reynolds, 1983), and absence of this prejudice may indicate that treatment is likely to be more acceptable in our population. The role of the predominant trade in this province, rice cultivation, must be borne in mind because of the risk of drowning.
We noted that self-esteem was not greatly affected in our population with epilepsy. This is surprising as epilepsy is, more often than not, reported to have a strong negative impact on a person's self-esteem or self-concept (Baker et al., 2005b). Observations similar to ours are, however, reported by other studies, in which no significant differences in self-esteem between epilepsy and nonepilepsy individuals were noted (Lee et al., 2008). The most likely explanation could be the presence of the following three important buffers: social support, seizure controllability (both frequency, and severity), and optimal knowledge (Smith et al., 1991; Amir et al., 1999; Baker et al., 2005b; Gauffin et al., 2010), two of which were well represented in our population.
We assessed QOL directly from a patient's perspective. This approach is used only infrequently, and the use of different questionnaires (Gilliam et al., 1997; Martin et al., 2005) limits possible comparisons. QOL is essentially subjective, and patients, not physicians, should determine what affects it. Self-administered questionnaires emphasize patients’ own feelings regarding their QOL, regardless of how they correspond to reality, thus limiting any interrater bias. Our results showed that the effect of epilepsy on QOL is determined by a limited number of factors only, particularly postictal headache (PIH) and anger due to seizures. PIH is frequently (15–51% cases) present but is often neglected (Kasteleijn-Nolst Trenite et al., 2010) and briefly investigated (D'Alessandro et al., 1987; Schon & Blau, 1987). It was similarly frequent (41.6% cases) in our population. Its high frequency among epilepsy subjects indicates that both may share common pathophysiologic mechanisms (Kasteleijn-Nolst Trenite et al., 2010). To date, neither the International Headache Society nor the International League Against Epilepsy mention that headache/migraine may be the sole ictal epileptic manifestation. Many characteristics of our study (young age of population, generalized seizures, long duration of epilepsy) are particularly found to be predisposing factors for PIH among epilepsy subjects (Ekstein & Schachter, 2010). Anger is briefly reported as a QOL-related factor (Arunkumar et al., 2000). A 2-year follow-up study among people with drug-resistant epilepsy showed that resective surgery led to a decline in anger, which in turn led to improved QOL (Meldolesi et al., 2007). Anger can be an outcome of many factors such as difficulty in finding a treatment, which most of our patients look for (see relevant results). Patients experience difficulties in switching from a “sick” to a “normal” role and are easily disappointed if expectations of positive life changes are not rapidly met. Other QOL factors such as cost and lack of a nearby health care facility are to be expected in populations with infrastructural deficiencies (Barennes et al., 2011). Other factors such as uncertainty of subsequent seizure (Gilliam et al., 1997; Martin et al., 2005); bed wetting; fear of injury; and worry if seizures can ever be controlled affected approximately 15% of cases individually (Gilliam et al., 1997; Malhi & Singhi, 2005; Martin et al., 2005). These factors have already been shown to have a negative correlation with QOL among patients with epilepsy. Elsewhere, it has been clearly demonstrated that the QOL of patients with epilepsy is not limited to seizure frequency or seizure counts alone (Jacoby & Baker, 2000), indicating the importance of factors such as those noted in our study.
Although our population was rural, both cases and controls had a high level of familiarity and favorable KAP toward epilepsy (Table 2). This differs from results in other populations that widely report that neither epilepsy patients (Long et al., 2000) nor the general public (Kim et al., 2003) is knowledgeable about epilepsy. Our results also refute the assumption that all rural populations are by default likely to have poorer (or derogatory) KAP scenarios (Bishop & Boag, 2006). Lack of knowledge may promote a feeling of incapacity and may reinforce the misconception that epilepsy has no treatment (Fernandes et al., 2005; Pandian et al., 2006). This is not likely to be the case in our population because of the presence of positive coping strategies and a relatively small treatment gap, as noted earlier in this population (Bhalla et al., 2012). Shame and worry were, however, noted among both cases and controls. Despite the presence of shame, concealment of epilepsy was infrequent in our population. This again is in contrast to many other populations (Dalrymple & Appleby, 2000; Hosseini et al., 2010).
We did not intend to carry out any age-specific or seizure-specific analyses because we analyzed the study population as “one population group,” that is, a mix of people of all ages and seizure types. This allowed our results to be closer to those in a real average general population. Besides this, a statistically significant difference in the age of cases and controls might have influenced our results to some but unknown extent. The use of our inventories can sometimes be time-consuming, even though their use is essential to derive a complete picture of what PWE actually feel and believe in any given population. With practice, the interview time can be reduced. It is often believed that illiteracy may affect a patient's ability to effectively understand and respond to questions, but patients in low-income countries, although illiterate, have a long history of epilepsy, which in most cases spans a number of years. It is therefore unlikely that patients, though illiterate, would be unaware of what is happening to them and to what extent.
Although the content of our QOL questionnaire was not directly developed by taking input from the patients, this does not diminish its value. As shown elsewhere in this article, our QOL questionnaire included 43 issues that are possible barriers to a good QOL among PWE. Issues of particular relevance to children were also included, for instance the bad taste of tablets. Therefore, patients had many issues from which to choose those correlating with their own life situation. Furthermore, our QOL questionnaire extracted issues seldom extracted by physician-derived QOL inventories. Prominent examples include anger, postictal headache, bed wetting, and the bad taste of tablets.
Some studies have reported a direct impact of a high seizure frequency or of a particular seizure type on the psychosocial health (stigma and QOL) of PWE (Baker et al., 1997). Conversely, other studies have found no such effect (Smith et al., 1991). In our study as well, “always thinking about epilepsy” (a factor for internalized stigma) was statistically unrelated to seizure frequency (p > 0.05). Many factors apart from seizure frequency or seizure type have been implicated in stigma. They include factors related to the presence of a family history of stigmatizing disorder, personal income, fear, employment, treatment, and neurobiologic factors (Broussard et al., 2012). Some of these factors have had a more profound stigma-promoting effect in our population as well (see relevant results above).
In contrast to epilepsy-related factors (e.g., seizure frequency or type), QOL in our population was related to those determinants that mirror the “phenomenon of epilepsy.” Such factors included seizure uncertainty, postictal headache, and anger. Thus it is likely that not just stigma but also QOL is determined by deeper neurobiologic mechanisms that underlie epilepsy. Such a neurobiologic correlation was earlier proposed for stigma alone (Hermann & Jacoby, 2009).
There was a strong correlation between seizure frequency (and/or seizure type) with self-esteem as well as epilepsy-related fear (of premature death). Such a correlation was reported earlier for self-esteem (Gauffin et al., 2010) alone. These correlations may indicate that self-esteem and fear among PWE can likely be negotiated through optimal seizure control, especially for those with generalized seizures.