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Summary: Purpose: To study the impact of epilepsy and its treatment on people with epilepsy in Estonia and to analyze how it is affected by the characteristics of epilepsy.
Methods: Clinical and demographic data about patients were obtained from medical notes and mailed self-completed questionnaires (including the RAND 36-Items Health Survey 1.0 (RAND-36)).
Results: Information was collected from 203 patients aged 20–74 years, who all had active epilepsy. A third of the respondents had been seizure free during the last year. Eighty-four percent were receiving monotherapy. More than half of respondents felt stigmatized by epilepsy, 24.7% of them highly so. A third were working full-time, 31.9% were underemployed workers, and 11%, unemployed. Sixty-two percent of these same unemployed or underemployed workers considered their epilepsy to be a significant reason for this situation. Overall, 44% believed they had been treated unfairly at work or when trying to get a job. Study respondents scored lower in all domains on the RAND-36 than did persons from the control group. The biggest differences were found in five domains: Social functioning, Role limitations–physical, Role limitations–emotional, General health, and Vitality.
Conclusions: The clinical characteristics of this study were similar to those of most other series of prevalence cases of epilepsy. The level of employment among persons with epilepsy was not lower than that in the general population. The percentage of stigmatization was high. There were significant differences in the way respondents scored on the stigma scale and on the RAND-36 domains when measuring their health status, depending above all on seizure frequency and type.
Although it is a universal brain disorder, epilepsy is often misunderstood. It is now widely acknowledged that people with epilepsy are as likely to be distressed by social and cultural problems as they are by continuing seizures, and that epilepsy has profound physical, psychological, and social consequences (1). Although current seizure frequency is one of the most important predictors showing the efficacy of treatment, it is not the only measure, especially from the patient‘s viewpoint, commonly used in clinical studies of new antiepileptic drugs (AEDs) (2). The effect of any disease is determined by several factors, including underlying biology, as well as host factors, and available medical interventions, but also by the attitudes and reactions of the surrounding society (3). Several studies have used health-related quality of life in epilepsy as an outcome measure and have also used it to give a broader measure of the burden of the disease (4). Quality of life is difficult to define but might be said to reflect functions in three main areas: physical, social, and psychological (1). Devinsky and Cramer (5) stated that the essence of quality of life is the balance between patients' perceived and desired status. It also is defined by how well one is able to function and how one feels about one's daily life (6), on the assumption that aspects of functional health status have an impact on quality of life. Although no definitive consensus has been reached concerning the essential nature of quality of life, there is some agreement that general health status is one of its main components (7). A variety of instruments are available to evaluate the perception of health in the general population. One of these, which also is among the most widely used questionnaires, is the RAND 36-Item Health Survey 1.0. It is a brief and intensively tested instrument that was derived from longer instruments developed by RAND researchers (Santa Monica, CA, U.S.A.) for the Medical Outcome Study (MOS) and the Health Insurance Experiment (8) to assess health status. The purposes and methods of the RAND study have been fully summarized (9,10). The RAND 36-Item Health Survey 1.0 items are identical to the MOS 36-item short-form health survey (MOS SF-36) described by Ware and Sherbourne (9). They were adapted from longer instruments completed by patients participating in the MOS (11). The conceptual framework is based on the multidimensional World Health Organization definition of health (12). Although the RAND version has a slightly different scoring method, it allows users of the MOS SF-36 and RAND-36 to relate their findings (9).
Because of the emphasis on the phenomenologic experience of the individual, it is necessary that quality of life be determined from the patient's subjective viewpoint, the physician's viewpoint being deliberately excluded, as self-reports are the primary method of assessing it (6) because, with very few exceptions, evaluations conducted by physicians tend to concentrate primarily on seizure management, leaving all else as secondary features (13). It has become relatively common to have patients make a judgment about their medical care (14). This means they must have the courage to express their opinion and show their dissatisfaction. There is a growing awareness of the psychosocial implications of epilepsy. People with epilepsy face social disadvantages not shared by those with other chronic diseases. Psychiatric problems, particularly anxiety, depression, and loss of self-esteem are common among people with epilepsy (15–26). Most patients feel that a prospective employer's knowledge of a diagnosis of epilepsy will make it more difficult for them to get a job (27). Information on these issues has come mainly from developed countries (26,28–33). Very few studies originate from developing countries (34–37), and there is clearly a lack of documented evidence regarding the impact of epilepsy in Eastern Europe (38,39).
Estonia, which is located in Eastern Europe on the coast of the Baltic Sea, regained its independence after the collapse of the Soviet Union. Today 64.6% of the 1.5 million people living in Estonia are ethnic Estonians. Among other nationalities, Russians represent the largest group (∼28.5%). The Russian-speaking population is not evenly distributed throughout the country (40). Southern Estonia revolves around Tartu, the historic university town and the country's second largest city. Tartu, the intellectual and educational center of Estonia, demonstrates relatively typical demographic characteristics for Estonia, with the exception that the percentage of the Russian-speaking population is lower than that in Estonia as a whole. Viljandi County, with a population of 62,336 (41), is considered to be first in the country in terms of the level of development of agriculture, and is located in south-central Estonia. The administrative center of the county is the town of Viljandi, which is situated 81 kms from Tartu.
This report is a comprehensive study of what it is like to have epilepsy in our society. It was conducted to pursue the following objectives: (a) to describe the quality of life for epilepsy patients on the grounds of perceived health status and possible stigma accompanying epilepsy and to analyze how it is affected by the characteristics of epilepsy; and (b) to analyze how quality of life is affected by the sociodemographic characteristics of epilepsy patients, with emphasis on their current employment status.
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The importance of measuring quality of life in epilepsy patients has been emphasized (8,13,26,43,44,51–54). In dealing with epilepsy, several authors have drawn attention to the special importance of considering the social aspects. At the same time, recent investigations based on community populations suggest that although significant social difficulties may be experienced, many people with epilepsy cope well in society. However, patients with poor seizure control, multiple seizure types, or associated handicaps have significant social problems (55). Our study focused on adults living in the community. To give a more extensive and accurate survey, the sample for the study was drawn from two Estonian towns differing from each other in several respects. One of them represented the country's urban society, and the other, a mainly provincial and rural population. On January 1, 1996, the estimated crude prevalence ratio of active epilepsy in Tartu was 4.1 per 1,000 (56). When comparing the percentages of sex and age structure of the people with epilepsy in the present study with the same data available about the people with epilepsy of Tartu, there were no significant differences, and thus we consider our study consecutive (Table 8). The clinical characteristics of the present study were similar to most other series of prevalence cases of epilepsy (57–59). Most of the study respondents had generalized seizures with or without other seizure types, the average duration of the disease was 11 years, and patients were predominantly receiving CBZ monotherapy. More than half of those who had experienced seizures during the last year reported having injuries related to them. Findings regarding the rate and severity of seizure-related injuries were slightly higher compared with the results of studies conducted in other countries (43,60). Beran (61) pointed out that the purpose of treating epilepsy may not necessarily be that of seizure eradication but rather the maximal improvement of quality of life for the patient. In comprehensive management, the treating physician must very seriously consider the influence of the therapy on the patients' quality of life (53). Eighty-four percent of our study respondents were receiving monotherapy. This was higher compared with the other studies (26,43,62). The explanation is that all of the patients from Tartu were participating in an epidemiologic survey with consultation by an epileptologist, which often resulted in the correction of medication. The number of untreated cases (11%) was not high and probably reflects insufficient compliance. However, AED prescription patterns had some distinctive features. CBZ was a much more frequently reported drug than in other studies, whereas the percentage of those using valproate (VPA) or phenytoin (PHT) was lower. To our surprise, two patients reported taking bensobarbital, a drug that is no longer officially used in Estonia. The results indicate that treatment strategies in Estonia probably should be modified. Significant numbers of study respondents (67%) reported side effects from the AEDs; the most commonly experienced side effects were nonspecific. In the past year, 41% of respondents had changed their medication; at present, 78% stated that the level of seizure control was satisfactory.
Table 8. Comparison of sex and age structure of Tartu people with epilepsy and those included in the present study
|Parameter||Among people with epilepsy in Tartu||Among people with epilepsy in Tartu in the present study||p|
|Sex|| || || || || |
| Female||137||44.3||66||54.1|| |
|Age groups|| || || || || |
| 20–29 yr||53||17.2||26||21.3||0.3|
| 30–39 yr||74||23.9||27||22.1||0.7|
| 40–49 yr||70||22.6||24||19.7||0.5|
| 50–59 yr||54||17.5||20||16.4||0.8|
| ≥60 yr||58||18.8||25||20.5||0.7|
The problem of stigmatization has been projected as one of the most common social problems faced by persons with epilepsy in a number of studies (23,37,63–66). Stigmatization seems to vary from region to region, and it tends to be more severe outside the developed world (67–72). However, despite its changed manner, it is still a difficult problem in Western countries. As stigmatization is difficult to compare, we collated our results only with the results from the European study (43) in which the same scale was used for measuring stigma. According to this, the highest proportions of stigmatized persons (>60%) were found among the respondents from two highly developed countries (i.e., France and Germany). The study also included respondents from Poland, the Czech Republic, and Hungary, where the percentages of stigma were 32, 55, and 52, respectively. In Estonia, the levels of stigma among people with epilepsy were also high (52%), although 40% of our study's respondents had less than one seizure a month, and 34% had been seizure free in the last year. The majority of patients stated that they were nevertheless satisfied with the current treatment, and the percentage of stigmatization in general and the percentage of severely stigmatized persons was high. The factors influencing the development and maintenance of stigma in different countries are diverse, but we speculate that in general, the higher percentage of stigmatization could be a characteristic of Eastern European countries and could be the result of a general lack of knowledge and of indifference, because the individual's health and well-being was not valued, for a long period, because of the complicated political status. Furthermore, more precise studies from other Eastern European countries could perhaps clarify this topic. Respondents were more likely to feel stigmatized by epilepsy if they had frequent seizures or a combination of seizure types, findings that were in agreement with the results of other studies (26,43,63,65). Stigmatization was more common among educated persons.
Unemployment and part-time employment, being much more frequent in the epilepsy population than in general, have been identified as being among the most serious problems facing people with epilepsy (73,74). The percentage of people working full-time and part-time was 65 in the present study; 11% were unemployed. We do not consider this high because, according to the data of the labor force surveys of the Statistical Office of Estonia, the percentage of employees (both employed and underemployed) residing in Tartu and aged 20 years and older on January 1, 1998, was 63%, the unemployment rate was 9.5%, and 25.5% were pensioners receiving the state pension (75). At the same time, more than half of the study's respondents believed that their employment problems were caused by their disease. A little fewer than half stated that they were being treated unfairly at work. Perceived discrimination may not always correspond to real discrimination (1). Although the findings of this study do not provide evidence of active discrimination against people with epilepsy, this topic must be investigated in greater depth. Of respondents, 55.7% had at least high school education, and problems connected with unemployment or part-time employment were not much expressed among this group. Not surprisingly, seizure frequency was positively related to the unemployed and underemployed workers, but we could not find a relationship with the type of seizure. The finding supports the data of previous research in which lower seizure frequency had been related to the greater likelihood of being employed (1,42,76). The results of our study showed very clearly that there are a variety of reasons for the existence of the stigma. Although it has been found that unemployment and employment problems are on the whole the main source of the stigma (17,42,65), the most educated respondents in our study who had jobs were even more stigmatized.
To assess general health status, a multidimensional instrument, the RAND 36-Item Health Survey 1.0, was used. Although they have proven useful in their countries of origin, such instruments are not directly applicable across nations because of cultural diversity (77). Before using it in our study, we performed a thorough translation and validation process. The construct validity of the scale was supported by the findings that those with frequent seizures did poorly compared with those who experienced infrequent seizures or were currently seizure free. This expected finding was in accordance with other studies (26,41,62,78,79). Although the differences between seizure types were not significant in all the RAND-36 domains, there was a clear tendency toward a greater likelihood of lower scores in the case of patients with generalized tonic–clonic seizures. Patients who experienced both generalized tonic–clonic and other types of seizures did poorly compared with the others, as was to be expected (26,43,78). Discriminant validity was highly acceptable. People with epilepsy had significantly lower scores than did the controls in all domains. Although the mental health of the study respondents was not much worse than that of the control group, their social functioning was significantly lower, and limitations due to emotional problems were more expressed. The results of the European study had previously drawn attention to the fact that it was unclear why respondents with epilepsy scored relatively poorly on the domain concerned with physical function (43). Although current seizure activity remained the most important predictor, there was a concomitant importance of sociodemographic variables (current age and employment status) in quality of life. Older people and people who were currently unemployed were more likely to score lower. The other substantial disease characteristics in explaining the variation in the scores of several domains after controlling for seizure status were age at onset of epilepsy, duration of disease, and seizure type. Age at onset became significant in the case of Physical functioning, Role limitations–physical, Energy/fatigue, Social functioning, and General health. In all those domains, later age at onset was associated with lower scores. Dominian et al. (80) reported an association between depression and older age at onset. Jacoby et al. (26) considered older age at onset to be implicated in feelings of depression and stigma. Duration of disease was significant in the case of Energy/fatigue, Emotional well-being, and Bodily pain. Here, a shorter duration of epilepsy was related to lower scores. Seizure type became significant in relation to Social functioning; those who experienced either tonic–clonic or multiple seizure types scored significantly lower than did those who had only other types of seizures.
To increase the clinical significance of these tests, it is essential to perform repetitive trials. This will be one of the subjects of further investigation. As the RAND-36 was not designed to measure limitations or restrictions specifically associated with epilepsy, a disease-specific instrument may be more sensitive in evaluating variations in patient perception (81,82).
We consider the strength of our study to be that epilepsy diagnosis was based on a clinical assessment. A profound translation and psychometrical testing phase preceded the inclusion of the RAND-36 questionnaire in the research. Although we are aware of the limitations to the generalizability of the study in the interpretation of the results because of a relatively small and somewhat biased sample size, the findings of the study reveal quite clearly that one of the main problems of people with epilepsy in Estonia is their perception of stigmatization. The characteristics describing their disease, its medication, and complications were generally in accordance with the data from other countries, and also marital and educational status (except when assessing the stigmatization) were not statistically significant. Achieving better control of seizures and reducing side effects are essential in improving the quality of life of people with epilepsy, because this reduces the stigma associated with the condition. We emphasize to doctors the importance of psychological support in the care of patients with epilepsy. Unfortunately, the results of our study suggest that, at least in our country, many physicians ignore or do not recognize this actuality, considering it irrelevant.
In conclusion, the findings of this study confirm that psychosocial problems accompany the diagnosis of epilepsy. Although the study demonstrated quality of life decreases in subjects with epilepsy, we consider the results encouraging. No remarkable differences were found in terms of medical problems. A further study is required in this field within our community to help people with epilepsy to better understand their condition, to analyze the reasons for stigma, and if it is not possible to eliminate them completely, then to promote adjustment.