6
Clinical Study Health-related quality of life of patients with epilepsy in Turkey Semih Giray a, * , Yarkin Ozenli b , Handan Ozisik c , Sibel Karaca a , Umit Aslaner b a Department of Neurology, Faculty of Medicine, Adana Hospital, Baskent University, Dadaloglu Mah. 39. Sk. No: 6, 01250 Yüregir, Adana, Turkey b Department of Psychiatry, Faculty of Medicine, Baskent University, Ankara, Turkey c Department of Neurology, Faculty of Medicine, Canakkale Onsekiz Mart University, Canakkale, Turkey article info Article history: Received 24 July 2008 Accepted 9 March 2009 Keywords: Health-related quality of life Generalized epileptic seizure Partial epileptic seizure Turkey abstract The aim of this study was to measure the health related quality of life (HRQOL) of epilepsy patients and to compare it with that of a healthy control group. The evaluation included the effects of the type of seizure, duration of seizure and medical treatment on the quality of life of the patients. The group studied con- sisted of 221 participants (121 epilepsy patients and 100 healthy control individuals) who completed a sociodemographic data form and who were administered the World Health Organization Quality of Life (WHOQOL-100) scale. The epilepsy patients had statistically lower physical health, psychological well- being, level of independence and global HRQOL than participants in the control group (p < 0.05). The anal- ysis of variance showed that the partial epilepsy subgroup had significantly lower averages for all the quality-of-life subfields except for the social relationship dimension. On regression analysis, being mar- ried, having a generalized type of seizure and being treated with fewer medications were all related to higher scores on the HRQOL. Epilepsy is a disease that has neurological, psychiatric and psychosocial dimensions that should be evaluated using a multidisciplinary approach. Ó 2009 Elsevier Ltd. All rights reserved. 1. Introduction Epilepsy is a common chronic neurological disease second only to headache in incidence. Of the general population, 2% to 5% expe- rience epileptic seizures at least once in their lifetime. However, the prevalence of active epilepsy ranges from 0.4% to 0.1%. The incidence of epilepsy in developing countries is higher than in developed countries. 1,2 Epilepsy affects the emotional and cogni- tive function of the patient, and causes disorders of motor function and loss of consciousness. In addition to medication, the treatment of epilepsy involves examining the patient holistically, taking into account the psychological and sociological aspects, as is done in rehabilitation therapy. 3–5 In the evaluation of health, the conventional measurements of morbidity, mortality and life expectancy used until recently are not sufficient. In modern health services the measurements of quality of life (QOL) are indispensable. 6–8 Initial studies relating to epilepsy patients were carried out in Western countries, where the concept of QOL originated. 3,9–12 Suurmeijer et al. found that psychological stress, loneliness, poor coping and adaptation, and disease stigma in epilepsy patients reduced their QOL. 9 Knowledge relating to the QOL of epilepsy patients in developing or in Eastern countries is limited. 13–15 In a Taiwanese study, the QOL of epilepsy patients compared to control groups was lower in terms of physi- cal health, psychological well-being, level of independence, and so- cial relationships. 14 A wide-ranging study carried out in Iran and the Gulf States (Bahrain, Kuwait, Oman, Qatar, United Arab Emir- ates) found a significantly lower QOL in physical condition, social functioning, energy, and liveliness. Researchers have emphasized, however, that differing results have been obtained from Western countries. 13 In studies evaluating the QOL of epilepsy patients, fac- tors such as the duration of disease, the frequency of seizures, the adverse effects of the drugs used, and the types of seizure were evaluated and reported to have possible effects on the QOL. 12,13 Turkey, with a population of approximately 70 million, is situ- ated between Asia and Europe. The attitude of our community to epilepsy is similar to neither developed Western countries nor to developing countries in the East. The purpose of this study was to measure the QOL of epilepsy patients in Turkey and to compare it with healthy control groups, and to evaluate the effects of the duration and type of seizure, and medical drug treatment on QOL. 2. Materials and methods The study group was made up of 121 patients with epilepsy (66 females [54.5%], and 55 males [45.5%]) who were monitored by the Department of Epilepsy of Inonu University’s Turgut Ozal Hospital, Malatya, and the Department of Neurology of Baskent University (Adana). Our study group was the same as the control group of our previous study. 7 Of the patients in the study group, 59 (48.8%) were diagnosed with generalized epileptic seizures and 0967-5868/$ - see front matter Ó 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.jocn.2009.03.028 * Corresponding author. Tel.: +90 322 3272727/1127; fax: +90 322 3271273. E-mail address: [email protected] (S. Giray). Journal of Clinical Neuroscience 16 (2009) 1582–1587 Contents lists available at ScienceDirect Journal of Clinical Neuroscience journal homepage: www.elsevier.com/locate/jocn

Health-related quality of life of patients with epilepsy in Turkey

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Page 1: Health-related quality of life of patients with epilepsy in Turkey

Journal of Clinical Neuroscience 16 (2009) 1582–1587

Contents lists available at ScienceDirect

Journal of Clinical Neuroscience

journal homepage: www.elsevier .com/ locate/ jocn

Clinical Study

Health-related quality of life of patients with epilepsy in Turkey

Semih Giray a,*, Yarkin Ozenli b, Handan Ozisik c, Sibel Karaca a, Umit Aslaner b

a Department of Neurology, Faculty of Medicine, Adana Hospital, Baskent University, Dadaloglu Mah. 39. Sk. No: 6, 01250 Yüregir, Adana, Turkeyb Department of Psychiatry, Faculty of Medicine, Baskent University, Ankara, Turkeyc Department of Neurology, Faculty of Medicine, Canakkale Onsekiz Mart University, Canakkale, Turkey

a r t i c l e i n f o a b s t r a c t

Article history:Received 24 July 2008Accepted 9 March 2009

Keywords:Health-related quality of lifeGeneralized epileptic seizurePartial epileptic seizureTurkey

0967-5868/$ - see front matter � 2009 Elsevier Ltd. Adoi:10.1016/j.jocn.2009.03.028

* Corresponding author. Tel.: +90 322 3272727/112E-mail address: [email protected] (S. Giray).

The aim of this study was to measure the health related quality of life (HRQOL) of epilepsy patients and tocompare it with that of a healthy control group. The evaluation included the effects of the type of seizure,duration of seizure and medical treatment on the quality of life of the patients. The group studied con-sisted of 221 participants (121 epilepsy patients and 100 healthy control individuals) who completed asociodemographic data form and who were administered the World Health Organization Quality of Life(WHOQOL-100) scale. The epilepsy patients had statistically lower physical health, psychological well-being, level of independence and global HRQOL than participants in the control group (p < 0.05). The anal-ysis of variance showed that the partial epilepsy subgroup had significantly lower averages for all thequality-of-life subfields except for the social relationship dimension. On regression analysis, being mar-ried, having a generalized type of seizure and being treated with fewer medications were all related tohigher scores on the HRQOL. Epilepsy is a disease that has neurological, psychiatric and psychosocialdimensions that should be evaluated using a multidisciplinary approach.

� 2009 Elsevier Ltd. All rights reserved.

1. Introduction

Epilepsy is a common chronic neurological disease second onlyto headache in incidence. Of the general population, 2% to 5% expe-rience epileptic seizures at least once in their lifetime. However,the prevalence of active epilepsy ranges from 0.4% to 0.1%. Theincidence of epilepsy in developing countries is higher than indeveloped countries.1,2 Epilepsy affects the emotional and cogni-tive function of the patient, and causes disorders of motor functionand loss of consciousness. In addition to medication, the treatmentof epilepsy involves examining the patient holistically, taking intoaccount the psychological and sociological aspects, as is done inrehabilitation therapy.3–5

In the evaluation of health, the conventional measurements ofmorbidity, mortality and life expectancy used until recently arenot sufficient. In modern health services the measurements ofquality of life (QOL) are indispensable.6–8 Initial studies relatingto epilepsy patients were carried out in Western countries, wherethe concept of QOL originated.3,9–12 Suurmeijer et al. found thatpsychological stress, loneliness, poor coping and adaptation, anddisease stigma in epilepsy patients reduced their QOL.9 Knowledgerelating to the QOL of epilepsy patients in developing or in Easterncountries is limited.13–15 In a Taiwanese study, the QOL of epilepsypatients compared to control groups was lower in terms of physi-

ll rights reserved.

7; fax: +90 322 3271273.

cal health, psychological well-being, level of independence, and so-cial relationships.14 A wide-ranging study carried out in Iran andthe Gulf States (Bahrain, Kuwait, Oman, Qatar, United Arab Emir-ates) found a significantly lower QOL in physical condition, socialfunctioning, energy, and liveliness. Researchers have emphasized,however, that differing results have been obtained from Westerncountries.13 In studies evaluating the QOL of epilepsy patients, fac-tors such as the duration of disease, the frequency of seizures, theadverse effects of the drugs used, and the types of seizure wereevaluated and reported to have possible effects on the QOL.12,13

Turkey, with a population of approximately 70 million, is situ-ated between Asia and Europe. The attitude of our community toepilepsy is similar to neither developed Western countries nor todeveloping countries in the East. The purpose of this study wasto measure the QOL of epilepsy patients in Turkey and to compareit with healthy control groups, and to evaluate the effects of theduration and type of seizure, and medical drug treatment on QOL.

2. Materials and methods

The study group was made up of 121 patients with epilepsy (66females [54.5%], and 55 males [45.5%]) who were monitored by theDepartment of Epilepsy of Inonu University’s Turgut Ozal Hospital,Malatya, and the Department of Neurology of Baskent University(Adana). Our study group was the same as the control group ofour previous study.7 Of the patients in the study group, 59(48.8%) were diagnosed with generalized epileptic seizures and

Page 2: Health-related quality of life of patients with epilepsy in Turkey

Table 1Sociodemographic characteristics of patients with epilepsy and healthy controls inTurkey.

Characteristics E C GE PEn = 121 n = 100 n = 59 n = 62

AgeMean 26.9 27.4 27.3 26.5SD 5.4 5.8 6.2 4.5Range 19–45 19–44 19–45 19–40

GenderM (%) 45.5 45 54.2 37.1F (%) 54.5 55 45.8 62.9

Education levelMean (years) 9.6 9.9 9.6 9.6SD 2.0 2.4 2.1 1.9Range (years) 5–15 5–15 5–15 5–15

Marital statusSingle (%) 77.7* 43.1 72.9 83.3Married (%) 22.3* 56.9 27.1 17.7

EmploymentYes (%) 38.5* 71.5 55.4 21.7�

Health insurance 99.1 70.4 100� 98.3�

C = control group, E = all epilepsy patients, F = female, GE = generalized epilepsy,PE = partial epilepsy, M = male, SD = standard deviation.* p < 0.05 between all epilepsy and control groups.� p < 0.05 between control and generalized epilepsy groups.� p < 0.05 between control and partial epilepsy groups.

S. Giray et al. / Journal of Clinical Neuroscience 16 (2009) 1582–1587 1583

62 (51.2%) with partial epileptic seizures. All generalized epilepsypatients had idiopathic generalized epilepsy. Of the partial epilepsysubgroup, 43 were afflicted with complex partial epilepsy and theother 19 with simple partial epilepsy. The criteria for the inclusionof epilepsy patients were those who: (i) had at least three seizuresper year; (ii) were18 years of age or older, (iii) were diagnosed ashaving epilepsy for a minimum of 1 year (iv) were on regular anti-epileptic drug (AED) therapy at the time of deciding to join the study;and (v) had normal cognitive functioning at the time of completingthe questionnaire. The disease duration of the generalized epilepticsubgroup ranged from 1 year to 11 years (mean ± standard devia-tion [SD], 3.06 ± 2.29 years). Of the study group, 83.5% were receiv-ing monotherapy, were stable, and suffered fewer than one seizureper month. The disease duration of the partial epileptic subgroupranged from 1 year to 7 years (mean ± SD, 1.98 ± 1.62 years). Ofthe partial epileptic subgroup, 59.7% were stable and receivingmonotherapy. Clinical and electroencephalographic findings wereused to diagnose epilepsy. Investigations, in particular surface elec-troencephalography (EEG) and brain imaging were carried out asclinically indicated. Epileptic seizures and syndromes were classi-fied using information obtained from the histories, physical exam-inations, and investigations conducted according to theInternational League Against Epilepsy (ILAE) guidelines (1981).16

Seizure types were classified according to ILEA.16 Patients werecategorized into two subgroups for analysis: (i) patients with par-tial seizures (simple partial seizures, complex partial seizures, orpartial seizures evolving to secondary generalized seizures); and(ii) those with generalized seizures (absence or atypical absence,myoclonic seizures, clonic-, tonic-, tonic–clonic-, and atonic sei-zures). Patients with epilepsy were diagnosed and classifiedaccording to the ILAE classification of epilepsy.16

The control group, comprising 100 healthy participantsmatched for age, sex, and education level, was randomly selectedfrom among the patients receiving treatment at the Dental Clinicsof Inonu University and Baskent University, since no data existedfor the QOL of the general population in Turkey.

The 121 consecutive patients, who were being monitored in theepilepsy clinic, consented to participate in the study and, with the100 healthy participants, completed the sociodemographic formand the World Health Organization Quality Of Life, Turkish version,(WHOQOL-100 [TR]) scale. All respondents possessed at least a ba-sic education, were able to read and write, and were capable ofindependently understanding and completing the questionnaires.

The sociodemographic information form included questionsrelating to name, age, education, marital status, residence, socio-economic status, and history of physical and mental status, theage of onset of seizures, seizure duration and the use of AED.

2.1. The Turkish WHOQOL-100 – WHOQOL-100 (TR)

The WHOQOL-100 (TR) scale consists of 100 questions an-swered by the patients. The scale also has a national domain calledsocial pressure, which consists of three questions. The validity ofthe social pressure domain in Turkey has been determined. TheWHOQOL-100 (TR) has been administered to participants in 15centers worldwide (n = 4,802). The survey contained six domains(physical, psychological, level of independence, social relationship,environment, global) and 24 facets. The survey is a Likert-typescale with scores between 1 and 5 where higher scores indicatebetter QOL.6 Fidaner et al. translated the scale and validated theTurkish version,17 which is internally consistent, reliable and hasconstruct validity.8

Statistical analysis was carried out with the Statistical Packagefor the Social Sciences version 11.0 (SPSS Inc., Chicago, IL, USA).The differences between the mean domain score and facet scoresbetween the different study groups (generalized epilepsy, partial

epilepsy, control group) were tested with a one-way analysis ofvariance (ANOVA). Dunnett’s post hoc tests were used for multiplecomparisons. Multivariate regression analysis was used for evalu-ating the relationship between variables. The dependent variablesare continuous variables analysed using linear regression analyses.

3. Results

3.1. Characteristics of the patient population

The epilepsy patients consisted of 66 females (54.5%) and 55males (45.5%) aged 19 years to 45 years (mean ± SD, 26.9 ± 5.4),whereas the control group consisted of 55 females (55%) and 45males (45%) of mean age 27.3 years (SD 5.5). Fewer epilepsy pa-tients were married and employed compared to the control group(v2 = 25.49, p < 0.001; v2 = 16.28, p < 0.001, respectively). How-ever, more epilepsy patients had medical insurance compared tothe control group (v2 = 36.31, p < 0.001) (Table 1). More thantwo-thirds of epilepsy patients were taking at least one AED.

3.2. WHOQOL-100 (TR)

Compared to the control group, epilepsy patients had lowerphysical health, psychological well-being, level of independenceand global QOL (p < 0.05). However, in terms of environment, socialrelationships, and social pressure, no difference was found be-tween the epilepsy patients and the control group (p > 0.05) (Table2). When compared to the control group, the facets in which epi-lepsy patients scored significantly lower were: pain, energy, sleep,positive feeling, memory, self-esteem, body image, negative feel-ing, mobility, daily activities, dependency on medicines, capacityto work, sexual activity, social care, opportunities for information,opportunities for recreation, physical environment, and transpor-tation. The facets in which no difference was found were: personalrelationships, social support, physical safety, home environment,financial resources, and spirituality (Table 3).

An ANOVA was used to evaluate QOL according to type of epi-lepsy. This showed differences between groups in all fields except

Page 3: Health-related quality of life of patients with epilepsy in Turkey

Table 2WHOQOL-100 (TR) scale scores (means ± SD) of six domains for all patients withepilepsy, the generalized epilepsy subgroup, the partial epilepsy subgroup andhealthy controls in Turkey and the national quality of life (social pressure) scores.

Domains E C GE PE(n = 121) (n = 100) (n = 59) (n = 62)

Physical 12.9 ± 3.04* 17.1 ± 0.93 14.3 ± 2.91� 11.5 ± 2.61�

Psychological 13.7 ± 3.02* 16.2 ± 1.04 14.9 ± 2.64� 12.8 ± 2.60�

Independence 13.7 ± 2.84* 16.5 ± 1.14 15.1 ± 2.62 12.8 ± 2.61�

Environment 13.9 ± 2.13 14.2 ± 1.94 14.8 ± 2.30 13.1 ± 1.64�

Social relationships 15.7 ± 2.03 15.4 ± 1.41 15.8 ± 2.34 14.1 ± 1.63Global QOL 12.9 ± 3.02* 15.8 ± 0.92 14.5 ± 3.08� 10.8 ± 2.69�

Social pressure 6.3 ± 1.80 6.0 ± 1.64 5.7 ± 2.60 7.0 ± 1.64 �

C = control group, E = all epilepsy groups, GE = generalized epilepsy, PE = partialepilepsy, QOL = quality of life, SD = standard deviation, WHOQOL-100 (TR) = Turk-ish version of the World Health Organization Quality of Life scale.* p < 0.05 between all epilepsy and control groups.� p < 0.05 between control and generalized epilepsy groups.� p < 0.05 between control and partial epilepsy groups.

1584 S. Giray et al. / Journal of Clinical Neuroscience 16 (2009) 1582–1587

for social relationships. The QOL domains of physical health,psychological well-being, level of independence, social relation-ships, environment, global health, and social pressure were respec-tively: F2,211 = 16.91, p < 0.05; F2.211 = 13.25, p < 0.05; F2,211 = 21.04,p < 0.05; F2,211 = 2.05, p < 0.13, F2,211 = 12.53, p < 0.05, F2,211 = 19.53,p < 0.05, F2,211 = 9.65, p < 0.05. Dunnett’s test, which identified thesubgroups between which these differences occurred, showed thatthe partial epilepsy subgroup had lower averages for all of the QOLsubfields except for social relationships. However, the generalizedepilepsy subgroup had lower scores for only physical health, psy-

Table 3WHOQOL-100 (TR) scale scores (means ± SD) on 24 facets for all patients with epilepsy, theTurkey.

Facets En = 121

Physical healthPain and discomfort (F1) 10.6 ± 2.53*,–

Energy and fatigue (F2) 13.1 ± 3.51*

Sleep and rest (F3) 13.0 ± 3.82*

Psychological well-beingPositive feeling (F4) 13.4 ± 3.72*

Learning, memory (F5) 13.5 ± 3.24*

Self-esteem (F6) 14.8 ± 3.91*

Body image (F7) 16.3 ± 3.03*

Negative feeling (F8) 13.0 ± 4.33*,–

Level of independenceMobility (F9) 12.4 ± 3.10*

Daily activities (F10) 13.1 ± 3.68*

Dependence on medication (F11) 8.7 ± 1.79*,–

Working capacity (F12) 15.1 ± 2.85*

Social relationshipsPersonal relationships (F13) 16.3 ± 3.53Social support (F14) 16.7 ± 3.44Sexual activity (F15) 11.8 ± 4.46*

EnvironmentPhysical safety (F16) 14.5 ± 3.09Home environment (F17) 15.3 ± 3.92Financial resources (F18) 13.8 ± 3.57Health/social care (F19) 12.7 ± 2.41*

Opportunities for information (F20) 14.5 ± 2.80*

Opportunities for recreation (F21) 13.2 ± 4.02*

Physical environment (F22) 12.8 ± 2.46*

Transport (F23) 12.7 ± 3.93*

Spirituality (F24) 14.0 ± 3.71

C = control group, E = all epilepsy groups, F = facet, GE = generalized epilepsy, PE = partialversion of the World Health Organization Quality of Life scale.* p < 0.05 between all epilepsy and control groups.� p < 0.05 between control and generalized epilepsy groups.� p < 0.05 between control and partial epilepsy groups.– As the scores of pain, negative feeling, and dependence on medication increase, the p

chological state, and global QOL. Surprisingly, the generalized epi-lepsy subgroup tended to have a high social relationship scorewhen compared to the control group (Table 2).

No difference was found between the generalized epilepsy sub-group and the control group in the facets of positive feeling, self-esteem, body image, negative feeling, working capacity, social sup-port, physical safety, home environment, financial resources, andsocial care. However, in the post hoc ANOVA, in which the partialepilepsy subgroup was compared to the control group, significantdifferences were found in all facets except for social support, homeenvironment, and financial resources (Table 3).

Of all epilepsy patients who were receiving AED treatment,71.07% were receiving monotherapy and 28.93% polytherapy. Dun-nett’s test showed significantly lower average values for all facetsfor polytherapy patients and in the main QOL fields (physicalhealth, psychological well-being, level of independence, social rela-tionships, environment, and global scale). The average, standarddeviation, and significance when compared to the control groupfor patients receiving monotherapy and polytherapy are shownin Table 4.

The patients were divided into two categories by duration of thedisease; 59 of all epileptic patients had been diagnosed less than 5years previously, and 62 of them had been diagnosed for longerthan 5 years. There was no effect of duration of disease betweenthe two groups. Dunnett’s test showed that there was a significantdifference between the control group and some QOL scores (phys-ical health, psychological state, level of independence, social rela-tionships, global scale). (Table 5).

generalized epilepsy subgroup, the partial epilepsy subgroup and healthy controls in

C GE PEn = 100 n = 59 n = 62

8.2 ± 1.75 9.8 ± 2.62�,– 11.4 ± 2.20�,–

16.4 ± 1.63 14.5 ± 3.09� 11.9 ± 3.34�

18.0 ± 1.91 14.9 ± 3.70� 11.1 ± 2.83�

15.0 ± 1.27 15.4 ± 3.02 11.5 ± 3.22�

16.8 ± 1.22 14.3 ± 3.55� 12.8 ± 2.69�

16.4 ± 2.22 16.1 ± 3.18 13.6 ± 4.13�

17.8 ± 2.13 17.0 ± 3.07 15.6 ± 2.73�

10.4 ± 2.58 11.8 ± 3.83– 14.6 ± 4.17�,–

16.5 ± 3.38 13.8 ± 3.99� 11.0 ± 2.88�

17.3 ± 1.14 14.7 ± 2.58� 11.5 ± 3.01�

5.8 ± 1.12 9.4 ± 4.30�,– 9.4 ± 2.65�,–

17.8 ± 1.86 16.3 ± 3.14 14.1 ± 4.28�

16.1 ± 2.93 14.5 ± 3.07� 13.0 ± 2.25�

15.8 ± 1.72 15.2 ± 3.26 15.9 ± 3.0116.7 ± 2.36 11.8 ± 3.66� 13.0 ± 2.47�

15.0 ± 1.07 15.3 ± 3.14 12.6 ± 2.38�

16.2 ± 2.22 16.2 ± 3.44 15.4 ± 4.6814.0 ± 3.06 14.2 ± 3.56 13.1 ± 3.4914.8 ± 0.92 14.2 ± 4.26 11.6 ± 3.05�

16.4 ± 2.76 14.9 ± 3.22� 10.8 ± 2.71�

16.9 ± 2.09 13.5 ± 2.70� 12.6 ± 3.25�

15.5 ± 2.34 12.9 ± 3.09� 12.7 ± 1.38�

17.6 ± 1.96 14.4 ± 3.11� 11.6 ± 1.49�

14.4 ± 3.01 16.0 ± 3.31� 12.2 ± 3.14�

epilepsy, QOL = quality of life, SD = standard deviation, WHOQOL-100 (TR) = Turkish

erson’s quality of life in these fields decreases.

Page 4: Health-related quality of life of patients with epilepsy in Turkey

S. Giray et al. / Journal of Clinical Neuroscience 16 (2009) 1582–1587 1585

Multivariate regression analysis was used to evaluate the rela-tionship between the variables. The main fields of WHOQOL-100(TR) were defined as independent variables; gender, marital sta-tus, seizure type, duration of seizure and number of medicationswere defined as dependent variables. Being married, having gen-eralized seizures and being treated with fewer medications wereconnected with higher scores for all domains of WHOQOL-100(TR) (Table 6).

4. Discussion

Until recently, prognosis in epilepsy was typically evaluated bythe frequency, type and intensity of seizures, symptoms after sei-zures, and the adverse effects of AED. However, measurements ofQOL have become important both for monitoring disease progressand for assessing the limitations caused by the disease. In thisstudy, we evaluated the QOL of patients with epilepsy in Turkeyand compared it to a control group.

Compared to the control group we found that patients withepilepsy had poorer physical health, and lower psychologicalwell-being, level of independence, and general QOL. However, nodifference was found between the epilepsy group and the controlin terms of environment, social relations, and social pressure. Inrecent years, studies that have investigated the QOL of patientswith epilepsy have reported that patients with epilepsy in differentcountries and regions experience different QOL.3,11–14 In Iran andthe Gulf States, the QOL of the patients living in these countries(Bahrain, Kuwait, Oman, Qatar, United Arab Emirates) was worsethan in Western countries in many fields.13 In our first data

Table 4WHOQOL-100 (TR) scale scores (means ± SD) on 24 facets and six domains for patients wcontrols in Turkey.

Facets/domains Monotherapy Pol(n = 86) (n

Physical health 13.8 ± 2.86 10.Pain and discomfort (F1) 10.0 ± 2.58– 12Energy and fatigue (F2) 14.3 ± 2.90 10.Sleep and rest (F3) 14.0 ± 3.52 10.

Psychological well-being 15.0 ± 2.09 10.Positive feeling (F4) 14.6 ± 3.01 10.Learning, memory (F5) 14.5 ± 3.05 11Self-esteem (F6) 16.5 ± 2.83 10.Body image (F7) 17.4 ± 2.42 13Negative feeling (F8) 11.4 ± 3.06– 16

Level of independence 15.1 ± 2.32 11Mobility (F9) 13.3 ± 3.66 9.9Daily activities (F10) 14.3 ± 2.53 9.8Dependenceon medication (F11)

8.7 ± 3.62– 11

Working capacity (F12) 16.9 ± 2.77 10.Social relationships 14.2 ± 2.20 12

Personal relationships (F13) 14.6 ± 2.54 11Social support (F14) 15.0 ± 3.32 13Sexual activity (F15) 13.1 ± 3.31 10.

Environment 14.0 ± 2.42 12Physical safety (F16) 14.8 ± 2.92 11Home environment (F17) 15.5 ± 4.13 16Financial resources (F18) 14.5 ± 3.55 11Health/social care (F19) 14.1 ± 3.78 9.9Opportunities for information (F20) 14.3 ± 2.80 9.1Opportunities for recreation (F21) 13.0 ± 3.18 13Physicalenvironment (F22)

12.8 ± 2.54 12

Transport (F23) 13.0 ± 3.05 13Spirituality (F24) 14.8 ± 3.64 9.5

Global scale 13.9 ± 2.93 9.5Social pressure 6.6 ± 2.18 7.2

F = facet, QOL = quality of life, SD = standard deviation, WHOQOL-100 (TR) = Turkish ver– As the scores of pain, negative feeling, and dependence of medication increase, the pe

obtained from Turkey, parallels are found with both the developedcountries in the West and in developing countries of the East. Inmany previous studies, it has been reported that the epilepsy pa-tients have worse QOL in terms of physical health, psychologicalwell-being and level of independence.13,18,19 However, in thesestudies, limited social relationships and social roles, and also agreater intensity of social pressure were found. In our study, the re-sults for patients with epilepsy were no different to the controlgroup in terms of social relationships and social pressure. Wefound that there was less stigma attached to epilepsy in our coun-try compared to developing countries in the East. Negative atti-tudes were found towards epilepsy patients in many Asiancountries.13–15,17,18 In many countries few patients with epilepsycould secure employment or were able to get married.20–22 Thegeneral attitude towards epilepsy patients in Turkey has beenmore positive and less derogatory. In our study, no differencewas found between the epilepsy patients and the control groupin terms of environmental quality of life. A study carried out inTaiwan suggested that equality in environmental quality of lifefor patients with epilepsy would depend on ready access tomedical services, and assistance from social security and facilita-tive government regulations.14 In Turkey, the government providessocial security to patients with epilepsy and also facilitates them tofind jobs; these factors need to be taken into consideration. In addi-tion, there might be an equalising effect in the social domainthrough the payment of small sickness salaries in addition to socialsecurity to some patients who are unable to work. However, in ourcontrol group, although most of the affected persons were capableof working, their social security benefits did not compensate them

ith epilepsy receiving anti-epileptic drug monotherapy or polytherapy and healthy

ytherapy Control F value p= 35) (n = 100)

6 ± 2.17 17.1 ± 0.90 19.77 <0.05.2 ± 1.59– 8.2 ± 1.69 13.36 <0.054 ± 3.17 16.4 ± 1.55 26.66 <0.054 ± 3.21 12.4 ± 2.96 14.27 <0.055 ± 2.42 15.1 ± 1.02 48.81 <0.054 ± 3.49 15.0 ± 1.97 19.97 <0.05.1 ± 2.24 16.8 ± 1.24 18.64 <0.055 ± 2.64 16.4 ± 2.17 53.77 <0.05.5 ± 2.44 17.8 ± 2.06 37.32 <0.05.9 ± 4.45– 10.3 ± 2.53 29.12 <0.05.0 ± 1.64 16.5 ± 1.12 52.64 <0.05± 2.67 16.4 ± 3.38 24.77 <0.05± 2.47 17.3 ± 1.14 26.24 <0.05

.2 ± 2.57– 5.8 ± 1.12 12.94 <0.05

8 ± 2.75 17.8 ± 1.86 57.66 <0.05.3 ± 1.15 15.7 ± 1.45 3.28 =0.03.6 ± 2.18 16.1 ± 2.93 11.14 <0.05.4 ± 2.52 15.8 ± 1.72 12.74 <0.055 ± 1.63 16.7 ± 2.36 6.40 <0.05.3 ± 1.16 14.2 ± 1.92 8.30 <0.05.5 ± 1.97 16.0 ± 1.08 7.90 <0.05.4 ± 4.10 16.2 ± 2.22 0.79 =0.45.5 ± 2.55 14.0 ± 3.06 15.08 <0.05± 2.24 14.8 ± 0.92 11.31 <0.05± 2.53 16.4 ± 2.76 55.17 <0.05

.2 ± 2.63 16.9 ± 2.09 0.31 =0.73

.8 ± 1.90 15.5 ± 2.34 7.84 <0.05

.0 ± 2.05 13.0 ± 4.08 0.04 =0.99± 4.52 14.4 ± 3.04 13.79 <0.05± 2.31 15.8 ± 0.78 24.03 <0.05± 1.18 5.5 ± 1.22 1.02 =0.35

sion of the World Health Organization Quality of Life scale.rson’s quality of life in these fields decreases.

Page 5: Health-related quality of life of patients with epilepsy in Turkey

Table 5WHOQOL-100 (TR) scale scores (means ± SD) on 24 facets and six domains for the duration of epilepsy for patients compared to healthy controls in Turkey.

Facets/domains Diagnosed for 6 5 years Diagnosed for >5 years Control F p(n = 59) (n = 62) (n = 100)

Physical health 12.7 ± 2.58 13.4 ± 3.37 17.1 ± 0.90 7.76 <0.05Pain and discomfort (F1) 10.7 ± 2.13– 10.6 ± 2.88– 8.2 ± 1.69 5.49 <0.05Energy and fatigue (F2) 12.2 ± 3.12 12.0 ± 3.54 16.4 ± 1.55 14.70 <0.05Sleep and rest (F3) 11.8 ± 3.19 12.1 ± 4.01 18.0 ± 1.88 6.40 <0.05

Psychological well-being 12.9 ± 3.58 13.4 ± 2.10 15.1 ± 1.02 4.29 <0.05Positive feeling (F4) 12.7 ± 3.98 13.2 ± 3.25 15.0 ± 1.97 3.44 <0.05Learning, memory (F5) 13.9 ± 2.98 13.1 ± 3.42 16.8 ± 1.24 3.95 <0.05Self-esteem (F6) 13.3 ± 4.07 13.1 ± 3.19 16.4 ± 2.17 10.08 <0.05Body image (F7) 15.6 ± 3.08 16.8 ± 2.79 17.8 ± 2.06 6.13 <0.05Negative feeling (F8) 10.7 ± 5.12– 11.3 ± 3.24– 10.4 ± 2.53 2.05 =0.13

Level of independence 13.8 ± 3.42 14.1 ± 2.15 16.5 ± 1.12 7.08 <0.05Mobility (F9) 12.5 ± 4.42 12.2 ± 2.98 16.4 ± 3.38 10.65 <0.05Daily activities (F10) 12.2 ± 3.74 12.9 ± 2.41 17.3 ± 1.14 3.93 <0.05Dependence onmedication (F11)

8.2 ± 2.81– 8.5 ± 3.81– 5.8 ± 1.12 12.67 <0.05

Working capacity (F12) 14.1 ± 4.37 14.2 ± 3.16 17.8 ± 1.86 5.23 <0.05Social relationships 15.3 ± 1.61 15.0 ± 2.52 15.7 ± 1.45 3.42 =0.03

Personal relationships (F13) 13.5 ± 2.68 13.9 ± 2.87 16.1 ± 2.93 8.65 <0.05Social support (F14) 15.0 ± 2.48 14.2 ± 3.72 15.8 ± 1.72 8.76 <0.05Sexual activity (F15) 11.7 ± 1.82 12.0 ± 3.94 16.7 ± 2.36 2.00 =0.13

Environment 13.7 ± 1.87 13.6 ± 2.55 14.2 ± 1.92 2.71 =0.06Physical safety (F16) 15.1 ± 2.87 14.7 ± 3.26 16.0 ± 1.08 2.64 =0.07Home environment (F17) 15.6 ± 3.55 15.0 ± 4.49 16.2 ± 2.22 2.76 =0.06Financial resources (F18) 14.1 ± 2.41 13.2 ± 4.34 14.0 ± 3.06 6.36 <0.05Health/social care (F19) 13.0 ± 3.81 12.8 ± 4.01 14.8 ± 0.92 6.00 <0.05Opportunities for information (F20) 12.5 ± 4.27 13.2 ± 2.81 16.4 ± 2.76 8.62 <0.05Opportunities for recreation (F21) 11.4 ± 2.20 11.7 ± 3.15 16.9 ± 2.09 9.50 <0.05Physicalenvironment (F22)

12.3 ± 1.28 12.3 ± 3.00 15.5 ± 2.34 10.16 <0.05

Transport (F23) 12.0 ± 1.54 13.9 ± 3.37 13.0 ± 4.08 4.45 =0.99Spirituality (F24) 13.8 ± 5.13 14.7 ± 3.52 14.4 ± 3.04 2.68 =0.07

Global scale 12.9 ± 3.55 13.4 ± 3.15 15.8 ± 0.78 3.57 <0.05Social pressure 6.4 ± 1.44 6.2 ± 2.36 5.5 ± 1.22 2.46 =0.07

F = facet, QOL = quality of life, SD = standard deviation, WHOQOL-100 (TR) = Turkish version of the World Health Organization Quality of Life scale.– As the scores of pain, negative feeling, and dependence of medication increase, the person’s quality of life in these fields decreases.

1586 S. Giray et al. / Journal of Clinical Neuroscience 16 (2009) 1582–1587

adequately. Therefore, social security remains problematic for ourcitizens.

The effect of seizure type on QOL has been tested in previousstudies. The results are contradictory. Baker et al.13 reported animpairment on QOL whereas others14,23 did not reveal any effectof seizure type. In our study, we found that the QOL for patientswith partial seizures was worse than for patients with generalizedseizures. We also determined that polytherapy was used more inpartial epilepsy patients. Many studies have shown the adverse ef-fects of polytherapy.11,13,14 The effect of multiple medications im-pairs QOL. We obtained similar results, but in contrast toprevious studies,3,14 observed that QOL was not affected by seizureduration. Moreover Jacoby et al. observed that a shorter duration ofepilepsy was related to lower QOL scores.24

Today, the importance of improving the QOL of patients withchronic disease is well understood. Special QOL scales have beendeveloped for patients with epilepsy and many chronic psychiatric

Table 6The results of multivariate regression analyses to determine the independent risk factors fo

Physical health Psychological we

Coeff. (SE) p Coeff. (SE)

Duration of seizure 0.05 (0.11) 0.658 0.149 (0.10)No. of medications –1.89 (0.37) 0.0001 –2.304 (0.34)Gender* (female) 0.15 (0.47) 0.741 –0.585 (0.44)Marital status* (married) –2.20 (0.55) 0.0001 –1.414 (0.51)Seizure type* (generalized) –2.42 (0.47) 0.0001 –1.633 (0.43)

Coeff.: Regression coefficients, SE = standard error of the mean, WHOQOL-100 (TR) = Tu* =Dummy variables.

and neurological diseases,25,26 and even though there are sometranslations of these scales into Turkish, their validity and reliabil-ity continue to be tested in our country. A limitation to our studywas the lack of national data on QOL of healthy people in Turkey.Our study was the first in Turkey to compare patients with epi-lepsy to healthy controls.

Epilepsy is a disease that has neurological, psychiatric and psy-chosocial dimensions and should be evaluated using a multidisci-plinary approach. In light of our study, we suggest that QOLshould be evaluated for patients who require long-term neurolog-ical and psychological treatments that will undoubtedly have aneffect on their QOL, and that these evaluations are best done byclinicians.

This initial controlled study contributes to our clinical under-standing of the QOL of Turkish epilepsy patients with respect totypes of epilepsy, their treatments and duration. Health-relatedQOL of epilepsy patients was worse than for control patients ex-

r low scores on the WHOQOL-100 (TR) subscales for patients with epilepsy in Turkey.

ll-being Independence level Social relationships

p Coeff. (SE) p Coeff. (SE) p

0.169 –0.10 (0.10) 0.288 0.03 (0.09) 0.6830.0001 –2.23 (0.32) 0.0001 –0.21 (0.30) 0.4760.148 –0.59 (0.40) 0.151 –0.11 (0.38) 0.7640.007 –2.07 (0.47) 0.0001 0.89 (0.44) 0.0450.0001 –1.92 (0.40) 0.0001 –0.66 (0.37) 0.081

rkish version of the World Health Organization Quality of Life scale.

Page 6: Health-related quality of life of patients with epilepsy in Turkey

S. Giray et al. / Journal of Clinical Neuroscience 16 (2009) 1582–1587 1587

cept for the domains of environment, social relationships, and so-cial pressure. We suggest that Turkish patients with epilepsy arefortunate in the social area because of the more positive generalattitude towards epilepsy patients in our country. The generalizedepilepsy patients had better health-related QOL compared to pa-tients with partial epilepsy. When the QOL of patients undergoingpolytherapy was compared to patients treated with a mono-therapy, the scores of all domains were worse. This type of studyin Turkey will serve as a preliminary to future cross-culturalstudies.

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