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Keywords:

  • Epilepsy;
  • Quality of life;
  • Impact;
  • Gulf and Near East regions

Abstract

  1. Top of page
  2. Abstract
  3. METHODS
  4. RESULTS
  5. DISCUSSION
  6. Acknowledgments
  7. REFERENCES

Summary: Purpose: To study the impact of epilepsy and its treatment on the quality of life of people living in Iran and in countries in the Gulf and Near East.

Methods: Clinical, demographic, and psychosocial details were collected through the use of a self-completed questionnaire distributed to patients attending hospital outpatient clinics.

Results: Data were collected from 3,889 people with epilepsy from 10 countries. More than 40% of all respondents had frequent seizures, and reported levels of side effects from medication were high, the most commonly reported being nervousness, headaches, and tiredness. A significant number of respondents reported changing their medications because of side effects or poor seizure control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. A significant number of respondents felt stigmatized by their epilepsy. Reported health status was reduced when compared with that of people without epilepsy, particularly for physical and social functioning and energy and vitality, as assessed by using a generic health status measure, the SF-36.

Conclusions: This is the largest study to date documenting the impact of epilepsy and its treatment in Iran, the Gulf, and Near East regions. Differences were found between the quality-of-life profiles of respondents in this study and those who participated in an earlier parallel study in Europe.

Epilepsy is a chronic condition with potential to affect significantly the broad range of aspects of quality of life (QOL). Previous studies of QOL in epilepsy have highlighted areas of common concern across a number of different sociocultural settings. For example, it has been shown that people with epilepsy in the United States and Europe are generally more prone to poorer self-esteem and higher levels of anxiety and depression than are people without epilepsy (1–4). People with epilepsy also consistently appear at greater risk of problems in relation to educational achievement (5–7) and employment (8–11). Social withdrawal and isolation (9,12,13), can lead to reduced opportunity for social relationships and consequently people with epilepsy are less likely to marry and have children (14,15). Significant numbers of people with epilepsy appear to experience some, if not all, of these commonly documented problems with life quality (16).

Many of the effects of living with epilepsy parallel those observed in other chronic conditions (17,18), whereas some appear more specifically to be the product of epilepsy per se. One explanation for the particular impact felt by people with epilepsy relates to the stigma, which has, historically, been associated with it (19). Numerous world-wide studies have documented misunderstanding, negative attitudes, and a basic lack of knowledge about the disorder among people with epilepsy themselves, their close family members (20), the general public (21–23), and among specific population subgroups such as health professionals (24,25) and employers (26,27). Another explanation relates to the clinical uncertainties that are a continuing feature of epilepsy for many people with it. Yet despite these enduring negative elements of epilepsy, previous research suggests that its impact may be minimal among the 60–70% of people whose condition can be well controlled; and their QOL profiles will be little different from those of nonepileptic populations (28,29).

Early descriptions of QOL in epilepsy have come predominantly from the United States, the United Kingdom, and other Northern European countries. Many of the studies report QOL profiles of people with epilepsy for a single country only (1,15,16,28); others are cross-cultural in focus and so permit between-country comparisons of QOL to be drawn (12,30). More recently, studies of QOL have been carried out in other parts of the world, including in Eastern Europe and the former Soviet Republic (31–34), Africa (35), and the Far East (36,37). These studies confirm earlier findings that QOL is compromised for people with epilepsy by clinical variables, most important, seizure frequency, and by sociodemographic factors such as age, gender, educational status, and economic activity. Social support has been shown to have a protective effect on QOL for people with epilepsy, as for those with other chronic conditions (38). To date, few studies appear to have been undertaken in the Middle Eastern countries, although in a recent study conducted in Jordan (39), rates of anxiety and depression were higher in adolescents with epilepsy than in nonepilepsy controls; and el-Hilu (40) noted that adverse effects for marriage, education, and occupation were common among people with chronic epilepsy in Kuwait.

The overall aim of the present study, therefore, was to assess the impact of epilepsy and its treatment on the daily lives of people with this condition in Iran and countries in the Gulf and Near East, as well as to compare and contrast the experience of people within this region with that of their counterparts in Europe (30).

METHODS

  1. Top of page
  2. Abstract
  3. METHODS
  4. RESULTS
  5. DISCUSSION
  6. Acknowledgments
  7. REFERENCES

The study was conducted in 10 countries and aimed to recruit ≤4,000 adults with epilepsy aged 16 or older. The sampling frame for the study was patients with epilepsy attending hospital outpatient clinics. Patients completed questionnaires while attending the clinics and, where necessary, with support from the local investigators. Local investigators distributed a cover letter from the authors explaining the purpose of the study. The questionnaire contained a number of scales and questions covering: seizure type and frequency, injuries associated with seizures, antiepileptic drug (AED) side effects, the perceived impact of epilepsy, feelings of stigma, and extent of worry over epilepsy and its treatment. All these scales and questions have been shown, through previous studies, to be valid, reliable, and meaningful for European populations of people with epilepsy (30). The questionnaire also contained a generic measure of health status, the SF-36 (41), for which U.K. and North American population norms are available (42,43) (although not, to our knowledge, available for countries in the Gulf and Near East). In addition, basic demographic details were collected. The whole questionnaire, including all scales, was subject to a process of forward and backward translation. The questionnaire was translated from English to Greek and Fufha (the official Arabic written language). The local investigators from each country, who were all native Greek or Arabic speakers, checked both accuracy and meaning of the translated versions both forward and backward and recommended amendments where necessary, which were discussed with G.B./A.J. before being finalized.

The questionnaire contained a number of scales and questions covering the following subjects.

Seizure type and frequency

Respondents were asked to categorize their seizures as only tonic–clonic, only other types, or both tonic–clonic and other types. They were asked to state whether they had had seizures once or more per month, less often than once per month, or not at all in the last year.

Injuries associated with seizures

Respondents were asked to state whether, in the past year, they had had a burn or scald, a head injury, a dental injury, or any other injury.

Antiepileptic drug side effects

Respondents were asked whether, during the past month, they had experienced any of a list of 21 symptoms associated with taking AEDs never, rarely, sometimes, always, or often. Evidence of the validity and reliability of this symptom checklist had been examined in an earlier study and is documented elsewhere (44,45).

Perceived impact of epilepsy

This is an eight-item scale to assess respondents' perceptions of the impact of epilepsy and its treatment on various aspects of daily functioning. Respondents were asked to assess the extent to which social relationships and activities, employment, overall health, and feelings of self were compromised by their condition (46).

Feelings of stigma

This is a three-item scale, developed originally for use in stroke patients, and subsequently adapted for use in epilepsy (47). Respondents whose score on the scale is zero are deemed not to feel stigmatized; the higher the positive score, the more stigmatized respondents are considered to feel.

Extent of worry over epilepsy

Respondents were asked to say to what extent they worried about their condition and about the effects of medication.

Health status

In addition to questions relating directly to their experience of having epilepsy, respondents also were asked to complete a well-established generic health-status measure, the SF-36 (41), for which U.K. population norms are available (42). The SF-36 includes 36 items addressing eight health concepts: physical functioning, social functioning, physical role limitations, emotional role limitations, mental health, energy/vitality, pain, and general health. Scores range from 0 to 100, with 100 representing the highest level of health and functioning.

Perceived quality of life overall

As a summary measure of respondents' overall life quality, the Terrible–Delighted Faces scale was used (48). Respondents were asked to say which of seven facial expressions, ranging from very happy to very unhappy, came closest to the way they felt about life as a whole.

Demographic details

Information was obtained about respondents' age, gender, and marital and employment status.

RESULTS

  1. Top of page
  2. Abstract
  3. METHODS
  4. RESULTS
  5. DISCUSSION
  6. Acknowledgments
  7. REFERENCES

Three thousand eight hundred eighty-nine questionnaires were returned, of which 42 were rejected as unusable, most often because the respondent was younger than 16 years or the questionnaire was >20% incomplete. This analysis is therefore based on 3,847 respondents. The breakdown of questionnaires contributed by each country is shown in Fig. 1. Information about the number of questionnaires sent out in each country is not available, and it is therefore not possible to calculate response rates for the countries that participated.

image

Figure 1. Percentage of questionnaires contributed to the study by each country.

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Demographic and clinical characteristics of respondents

The mean age of the study population was 30 years; 50% of respondents were men. A high proportion (57%) were single, 39% were married or cohabiting, 3% separated or divorced, and 1% widowed. Thirty-six percent of respondents were currently in paid employment. In all, 10% of respondents said epilepsy was the reason they were not working. Of those who were unemployed, 5% were registered permanently ill, 3% were retired, 21% were students, and 8% were unemployed, but said they were actively looking for work.

The mean age at onset of epilepsy in the study population was 18 years (range, 0–97 years), and the mean duration of epilepsy was 10 years (range, 0–66 years). Forty-five percent of respondents reported having only major (generalized) seizures; 23%, both major and “other” seizures; and 32%, other types of seizures only. Forty-two percent of respondents had been seizure free in the last year; 33% had less than one seizure per month; and the remaining 25% reported having had one or more seizures per month

Respondents were asked whether they had had any seizure-related injuries in the last year. Eight percent reported a burn or scald; 14%, a head injury; 7%, a dental injury; and 3%, a fracture. Fewer than one fifth of all respondents (16%) reported long-term health problems in addition to their epilepsy. Sixteen percent considered their health in general to be excellent, and a further 60%, very good or good; 19% described it as fair, and 5%, as poor. The percentage of respondents describing their health as “excellent” ranged from only 7% of respondents in Oman to 24% in Qatar; results from respondents considering their health to be “poor” were rather more comparable, ranging from 3% (in Cyprus and Syria) to 7% (in Iran and Kuwait). Significant differences were found between health ratings across countries (χ2 = 260.1; df= 36; p < 0.01; Table 1).

Table 1. Reported health status by country
CountryHealth rating
Excellent (%)Very good or good (%) Fair (%) Poor (%)
  1. χ2, p < 0.001.

Bahrain (n = 200)1970 74
Cyprus (n = 150)1164223
Iran (n = 942)1352287
Jordan (n = 407)1670 95
Kuwait (n = 326)1957177
Lebanon (n = 909)1960174
Oman (n = 70) 756334
Qatar (n = 248)2464102
Syria (n = 245)1659223
UAE (n = 343)1361206

Antiepileptic drug therapy

All but 2% of respondents were taking AEDs. Sixty-one percent were receiving monotherapy, 29% were taking two AEDs, 7% were taking three, and 1% were taking four or five AEDs. More than one third (36%) of the respondents receiving AED therapy were taking carbamazepine (CBZ); 23%, sodium valproate (VPA); 13%, phenytoin (PHT); 9%, phenobarbitone (PB); and 15%, lamotrigine (LTG). Four percent were taking some other AED [most commonly topiramate (TPM) or gabapentin (GBP)]. For AED use by country, see Table 2.

Table 2. Frequencies of antiepileptic drug use by country of residence
CountryType of AED (%)
CBZVPAPHTPBLTGOther
  1. CBZ, carbamazepine; VPA, sodium valproate; PHT, phenytoin; PB, phenobarbitone; LTG, lamotrigine.

Bahrain371826 611 
Cyprus3521 6 42410
Iran3226101714 1
Jordan4522 8 318 4
Kuwait5023 8 311 5
Lebanon292314 71710
Oman392211 123 4
Qatar441616 516 3
Syria392221 512 1
UAE38232011 7 1

Although the majority of respondents (93%) taking AED medication described their epilepsy as very or fairly well controlled, 5% considered it was not at all well controlled by their medication. Thirty-one percent of respondents currently taking medication had changed it at least once in the last 12 months because of problems with side effects, and 5% had changed it 3 or more times. Respondents were asked to report any problems or side effects that they thought had been caused by their medication. For each problem listed, they were asked whether it had always, often, sometimes or rarely, or never been a problem in the last month. Table 3 shows the percentage of patients reporting each problem. The most commonly experienced side effects were nervousness, headache, tiredness, behavioral problems (such as agitation and temper tantrums), and sleepiness/drowsiness. In addition, almost half (46%) of all respondents said they worried “some” or “a lot” about the possible side effects of their medication.

Table 3. Reports of antiepileptic drug side effects
Reported side effect% of respondents saying “always/ often/sometimes” a problem
Nervousness58
Headache53
Tiredness50
Behavior problems (e.g., agitation)50
Sleepiness/drowsiness47
Difficulty paying attention46
Memory problems43
Unsteadiness/dizziness42
Restlessness39
Shaky hands/tremor38
Upset stomach/nausea32
Disturbed sleep32
Loss of appetite32
Weight gain30
Hyperactivity27
Disturbed vision26
Trouble with mouth/gums21
Problems with skin (e.g., rash)18
Weight loss17

Compliance rates in this study population were moderately high, with 60% reporting that they never missed taking their tablets. Twenty-three percent reported that they missed taking their medication less than once per month; 10% reported that they missed their medication more than once a month, but less than once a week; and 7% reported that they missed taking their medication once a week or more.

Perceived impact of epilepsy

Respondents were asked to what extent they felt their epilepsy and its treatment affected a number of different aspects of daily living. Responses were drawn from the Impact of Epilepsy scale. High percentages of respondents (more than one third) reported that their condition substantially negatively affected their overall health, future plans and ambitions, and their feelings about themselves. In addition, more than one fourth felt that relationships with friends and family, social activities, the ability to gain paid employment, and standard of living were negatively affected. However, substantial proportions of individuals felt that many aspects of their daily lives were largely unaffected by their condition (see Table 4). Respondents in Oman were most likely to say that their epilepsy affected all 10 domains negatively. Respondents in Jordan and Bahrain reported that their epilepsy had the least impact on daily function. χ2 Analyses revealed significant differences between countries on each of the domains (p < 0.01; see Table 3). As in our earlier European study, respondents with frequent seizures were more likely than the rest to feel that epilepsy affected “a lot” or “some” of the various aspects of their daily lives (data not presented). Similarly, respondents experiencing multiple seizure types were more likely to feel this than were those having only one type of seizure (data not presented).

Table 4. Perceived impact of epilepsy on aspects of daily living
Aspect of daily livingFelt epilepsy and treatment affected:
A lot or someA littleNot at allNo. of respondents
Relationship with spouse/partner11 7823,809
Relationship with other family members2716573,830
Social life and activities3120493,830
Ability to work in paid employment2713603,762
Nature of paid work17 7763,817
Health overall3522433,839
Relationships with friends2615593,839
Feelings about self3823393,828
Future plans/ambitions3620443,829
Standard of living3018523,822

Significant differences were found between countries on each of the domains (p < 0.001; Table 5). For all 10 domains, respondents in Oman were most likely to say that their epilepsy had a negative impact. Respondents in Jordan and Bahrain were consistently least likely to report that their epilepsy affected daily functioning.

Table 5. Perceived impact of epilepsy by country (%)
CountryArea affected some/a lot by epilepsy
Relations with spouseRelations with familySocial life/ activityAbility to workNature of paid workOverall healthRelations with friendsWay feel about selfFuture plansStandard of living
Bahrain13/200 (7%)27/200 (14%)42/200 (21%)53/200 (27%)25/200 (13%)40/200 (20%)37/200 (19%)71/200 (36%)74/200 (37%)50/200 (25%)
Cyprus 28/150 (19%)36/150 (24%)55/150 (37%)44/150 (30%)36/150 (24%)50/150 (33%)42/150 (28%)61/150 (41%)66/150 (42%)49/150 (33%)
Iran105/943 (11%)348/943 (37%) 354/943 (38%) 272/943 (29%) 192/943 (20%) 458/943 (49%) 301/943 (32%) 434/943 (46%) 439/943 (47%) 374/943 (40%) 
Jordan25/407 (6%)60/407 (15%)75/407 (18%)84/407 (21%)52/407 (13%)77/407 (19%)58/407 (14%)95/407 (23%)89/407 (22%)63/407 (16%)
Kuwait 34/329 (10%)129/329 (41%) 153/329 (47%) 117/329 (39%) 79/329 (25%)172/329 (53%) 134/329 (41%) 161/329 (50%) 149/329 (46%) 151/329 (46%) 
Lebanon79/909 (9%)183/909 (20%) 207/909 (23%) 181/909 (20%) 113/909 (13%) 107/909 (23%) 155/909 (17%) 280/909 (31%) 227/909 (25%) 210/909 (23%) 
Oman  16/70 (23%) 27/70 (41%) 33/70 (49%) 30/70 (48%) 24/70 (36%) 43/70 (61%) 33/70 (47%) 48/70 (69%) 42/70 (61%) 37/70 (53%)
Qatar 27/249 (11%)59/249 (24%)72/249 (29%)52/249 (23%)46/249 (19%)84/249 (34%)60/249 (24%)80/249 (33%)87/249 (35%)70/249 (29%)
Syria 35/246 (14%)74/246 (30%)89/246 (36%)75/246 (31%)45/246 (18%)79/246 (32%)75/246 (31%)110/246 (44%) 117/246 (48%) 87/246 (36%)
UAE 59/344 (17%)92/344 (27%)109/344 (32%) 87/344 (26%)45/344 (13%)108/344 (32%) 82/344 (24%)107/344 (31%) 107/344 (31%) 71/344 (21%)
χ2p < 0.001p < 0.001p < 0.001p < 0.001p < 0.001p < 0.001p < 0.001p < 0.001p < 0.001p<0.001

Perceived stigma of epilepsy

More than one third of all respondents in the study felt stigmatized by their epilepsy, and 11% answered “yes” to all three items, indicating that they felt highly stigmatized by their condition. Respondents in Oman were most likely and those in Jordan least likely to report feeling stigmatized (Fig. 2). As for perceptions of the impact of their condition, respondents' perceptions of stigma differed according to key clinical variables: hence respondents were more likely to feel stigmatized by their epilepsy if they had a combination of seizure types or frequent seizures, those with very frequent seizures being >4 times more likely than those who were seizure free to feel highly stigmatized (Table 6).

image

Figure 2. Stigma by country.

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Table 6. Reported stigma by seizure type and seizure frequency
Seizure typeScore on Stigma scale
0 (n = 2,552)1 (n = 532)2 (n = 330)3 (n = 410)
  1. The numbers exclude the 55 respondents who did not answer these items.

Major seizures only68%14%7%11%
Other seizures only72%13%8%7%
Major and other seizures57%16%12%15%
Seizure frequencyScore on Stigma scale
0 (n = 2,538)1 (n = 525)2 (n = 327)3 (n = 403)
 
None in last year77%12%6%5%
Less than one per month67%14%9%10%
≥1 or more per month49%16%13%22%
All respondents67%14%8%11%

Perceived health status

In addition to questions relating directly to their experience of having epilepsy, respondents were also asked to complete a well-established generic health-status measure, the Short Form Health Survey (SF-36). We compared mean scores for the study population with published norms for general population samples in the United Kingdom (42) and North America (43). Although the U.K. norms relate to people aged 16–64 only, only 2% of our study population were aged 65 and older. Study respondents scored lower on all but one (pain) of the eight domains than did individuals in the U.K. and U.S. general populations without any long-term illness. When compared with members of the U.K. general population with long-standing illnesses, the respondents with epilepsy in this sample scored higher on all but the emotional role limitation and mental health domains (Fig. 3). Individuals with mixed seizure types had lower mean scores on every domain than did those who experienced only a single seizure type. Similarly, individuals who had frequent seizures (one or more per month) had lower mean scores than did those having seizures infrequently or those who were seizure free.

image

Figure 3. Comparison of mean scores for the SF-36 health measure.

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Respondents in Oman had the lowest mean scores overall (with the exception of the energy domain), followed by Kuwait. Respondents in Bahrain scored highly on many of the domains, as did those in the Lebanon and Qatar. The mental health and energy domains produced the lowest overall mean scores across all countries. For physical role limitations and emotional role limitations, wide cross-country variation between scores was noted, with respondents from Bahrain scoring most highly on both domains. Mean scores for the energy and mental health domains were broadly comparable, as were scores for pain and general health [with the exception of Oman (in the pain domain) and Oman and Iran (for general health), which demonstrated the lowest mean scores] (Table 7).

Table 7. SF-36 domain scores (means) by country
SF-36 domainBahrainCyprusIranJordanKuwaitLebanonOmanQatarSyriaUAE
PF92.683.985.987.169.985.464.586.588.487.9
SF79.775.575.084.067.179.963.278.771.778.0
RP85.872.268.882.162.578.349.382.165.575.6
RE85.968.961.483.366.780.849.379.362.076.0
MH61.062.359.862.460.964.856.567.956.767.6
E56.859.859.450.853.962.251.961.855.266.1
P82.879.677.686.375.586.264.887.481.288.0
GH64.263.557.771.063.468.651.067.861.563.6

Perceptions of overall quality of life

Response options on the overall perception of QOL question ranged from extremely happy to extremely unhappy (on a 7-point scale). More than a third of respondents (40%) described themselves as extremely or very happy; a further 27%, as fairly happy; and 17% selected the face with the neutral expression. Nine percent described themselves as fairly unhappy, and a further 7%, as either extremely or very unhappy. Figure 4 shows the percentages of respondents in each country who described themselves as “extremely” or “very” happy and “extremely” or “very” unhappy when considering their overall QOL. As can be seen, respondents in Syria were least likely to describe themselves as extremely or very happy, and respondents in Qatar were most likely. Similarly, respondents in Syria were most likely to describe themselves as extremely or very unhappy, and those in Qatar were least likely to do so (see Fig. 4).

image

Figure 4. Perceived quality of life by country.

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Stepwise multiple-regression analysis was performed by using scores on the overall QOL measure (terrible–delighted faces scale) as a dependent variable with clinical, demographic (including country of origin), and psychosocial factors as predictor variables. We chose the terrible–delighted faces scale, as this was a global measure that has been shown to correlate with both clinical and demographic characteristics of epilepsy. The results of the multiple-regression analysis clearly demonstrated that country of origin, scores on the SF-36 mental health, general health, energy and fatigue, stigma score, and seizure frequency were the most significant predictors accounting for 49% of the variance, and this was significant. When country of origin was removed from the model, scores on the SF-36 mental health, general health, energy and fatigue, stigma score, age, seizure frequency, and gender were the most significant predictors, accounting for 48% of the variance.

DISCUSSION

  1. Top of page
  2. Abstract
  3. METHODS
  4. RESULTS
  5. DISCUSSION
  6. Acknowledgments
  7. REFERENCES

This is the largest study to date of QOL of people with epilepsy in Iran and countries in the Gulf and Near East. Many of the results presented here confirm the findings of earlier worldwide research about the widespread repercussions of epilepsy on a person's social and psychological well being (1,3,12,16). In addition, comparisons can be drawn with the European study from which this survey was replicated and which was carried out by two of the authors (G.A.B., A.J.).

The European study involved >5,000 people with epilepsy living in 15 countries in Europe. Clinical and demographic details and information about psychosocial functioning were collected by using self-completion questionnaires sent by post to members of epilepsy support groups. Results revealed the following: More than one third of all respondents had frequent seizures; the reported levels of side effects from medication were high; respondents also reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives; and half of all respondents felt stigmatized by epilepsy (30). Results from this study are overall very similar, apart from the level of reported stigma, which was higher in the European countries.

A number of reservations in the design of this current study may limit the generalizability of its results. First, the sample was not a random one but was drawn from hospital clinic lists, and the results may tend to reflect the views of individuals for whom living with epilepsy is most problematic. Second, in this study, questionnaires were administered to patients in the clinic setting, whereas in our earlier study in Europe, they were mailed to members of epilepsy support groups for self-completion. Some evidence from the literature indicates that different methods of survey administration produce different overall and item-specific response rates (49). Third, we used a questionnaire originally devised for use in European communities and that may therefore suffer from some ethnocentric bias. As noted earlier, the questionnaire was subjected to the process of forward–backward translation, and we are reasonably confident about its semantic equivalence. However, resources were unavailable to examine fully the more challenging issues of content and conceptual equivalence (50). Our findings do suggest, however, that the questionnaire had good criterion equivalence, in that it performed similarly in this study and in our earlier European one (for example, QOL profiles were patterned in the same way in relation to factors such as seizure frequency and type). We accept that the study would have benefited from a greater knowledge of issues specific to each country, which might have influenced their responses and response rates. We accept that this is a limitation of the study.

Despite these limitations, the results are valuable in providing insights into how the QOL of people with epilepsy can be improved. The majority of respondents in this sample reported infrequent seizures, with only one fourth of the sample experiencing one or more seizures per month. It is unsurprising, therefore, that almost all respondents described their epilepsy as very or fairly well controlled. However, more than one third of respondents had changed their medication at least once in the last 12 months because of unsatisfactory seizure control.

In recent years, considerable emphasis has been placed on the desirability of monotherapy, and in our study population, almost two thirds of the respondents reported taking only one AED. However, significant numbers of respondents reported AED side effects, and a large proportion had changed medication because of them. Considerable variation in prescribing patterns was noted between countries in this region, both with regard to the use of mono- versus polytherapy and in relation to the specific AEDs prescribed.

As predicted, epilepsy was perceived by the study sample to affect many different aspects of their daily lives. The extent to which it was seen to do so was greatest among those experiencing frequent seizures or a mixture of seizure types; and marked differences were seen by country of residence. Similar patterns emerged for perceived stigma and self-assessed health status. Further analyses will explore the relative importance of these and other clinical and sociodemographic characteristics in explaining scores on each of these three measures.

One interesting finding from the data was that markedly fewer respondents in this study reported feeling stigmatized at all and feeling highly stigmatized by their epilepsy, when compared with those in our earlier study in Europe (30). This is despite a number of previous studies reporting that in the countries in question, prevailing attitudes toward epilepsy are less than entirely positive, and epilepsy is seen to have a negative effect on marriage, education, and occupation (39,40,51). For example, a survey of public views toward epilepsy conducted in 1995 in Dubai, Sharjah Emirates, and the United Arab Emirates showed that significant proportions of respondents (68%) thought that “their children should not marry a person with epilepsy,” and smaller numbers (10%) reported that “people with epilepsy should not be employed in jobs as other people are” (51). One possible explanation for this apparent contradiction is that in the countries involved, people seen for treatment for their epilepsy are more affluent members of their societies and so less susceptible to the effects of stigma. Another is that our three-item stigma scale was not crossculturally valid and so was insensitive to the issue of stigma, as played out in the countries in question. Further work is required to explore and elucidate this issue more fully.

It is difficult, in a large-scale, quantitative study such as this, with the potential biases discussed earlier, to know how to interpret this finding. It does, however, suggest a need for further, including qualitative, work to explore the issue of felt stigma crossculturally and the extent to which the differences observed are real or artifactual.

As in our European study, we noted some important between-country differences for all the indicators of QOL we used. Also, as in that earlier study, some consistent patterns were seen, with people living in Oman appearing to fare least well overall, and those in Jordon, best overall in terms of life quality. In our earlier article, we suggested a number of possible reasons for the patterning observed across European countries—including between-country legal/statutory differences; varying availability and accessibility of health and social care; differing societal attitudes toward epilepsy; contrasting outlooks on life and expectations; and artifact. The question as to why Oman and Jordan consistently represent the extremes for QOL in this study requires a much more in-depth study of the cultural norms and values of the countries concerned.

In summary, this study is the first to our knowledge to attempt to document the impact of epilepsy across countries in these regions of the world. Although limitations exist as to its generalizability, the authors would suggest that the results reported offer valuable insights, at the same time confirming that many issues faced by people with epilepsy are common across cultural boundaries. The desires expressed by people with epilepsy to be seizure free, with treatment that produces minimal side effects, and to live in a community where they are not discriminated against because of their condition are clearly universal.

Acknowledgments

  1. Top of page
  2. Abstract
  3. METHODS
  4. RESULTS
  5. DISCUSSION
  6. Acknowledgments
  7. REFERENCES

Acknowledgment:  This study was supported by a grant from GlaxoSmithKline. We are grateful especially to Mrs. Veronica Ellina, Mrs. Heba Hani, Dr. Nauman Rashid, and Mr. Khalid Amin for their support. We are extremely grateful to all clinicians who were involved in the study. The names of those involved from each country are listed in Appendix 2. Our thanks to all the respondents who took the time and trouble to complete the questionnaires. We hope the study will help to raise awareness of the problems they face and contribute to efforts to improve their quality of life.

Membership of the SIGN group: Dr. Adel Al Jishi, Dr. Hajir Sikaroodi, Dr. Sayed Jalal Ziaei, Dr. Kurosh Gharagozli, Dr. Reza Khandaghi, Dr. Mohammad Hossein Harirchian, Dr. Shahriar Nafissi, Dr. Manouchehr Ilkhani, Dr. Jamshid Lotfi, Dr. Mohammad Mehdi Zolfaghari, Dr. Majid Ghafarpour, Dr. Mahmoud Motamedi, Dr. Mohammad Mehdi Etemadi, Dr. Hossein Pakdaman, Dr. Alireza Nikseresht, Dr. Abdolrahman Najlerahim, Dr. Ballal Adibeig, Dr. Akbar Soltanzahdeh, Dr. Mostafa Shirzadi, Dr. Babak Zamani, Dr. Anil Tusso, Dr. Asmahan Shubaily, Dr. Pratap Chand, Dr. Subashini Prabhakar, Dr. Tag Eldin Sokrab, Dr. Richard McLachlan, Dr. Manorama Devi, Dr. E.V. Joshy, Dr. Jihad Insashi, Dr. Chaker Khamis, Dr. Mounir Khoury, Dr. Naji Riachi, Dr. Salim Atrouni, Dr. Kamel Ezzedine, Dr. Houssein Abed Ali, Dr. Abdul Rahman Samra, Dr. Abbas Serhan, Dr. Hassan Abdallah, Dr. Raymond Chemaly, Dr. Rached Succari, Dr. Hassan Eid, Dr. Shawkat Beaini, Dr. George Hanna, Dr. Bassem Yammout, Dr. Rosette Jabour, Dr. Ali Mokdad, Dr Mohammad Mikati, Dr. Abdellatif Wraikat, Dr. Fouad Ibrahim, Dr. Adnan Al-Abdallat, Dr. Yacoub Al-Bahu, Dr. Fairouz Al Sayegh, Dr. Ahmad Khalifa, Dr. Imad Saadeh, Dr. Nouha Toubal, Dr. Yaman Daboul, Dr. Savvas Papacostas, Dr. Andri Mallikidou, and Dr. Socrates Panayides.

REFERENCES

  1. Top of page
  2. Abstract
  3. METHODS
  4. RESULTS
  5. DISCUSSION
  6. Acknowledgments
  7. REFERENCES