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Epilepsy & Behavior 10 (2007) 571–575

Health-related quality of life in adolescents with well-controlled epilepsy

Dejan Stevanovic *

Health Care Center, Street Mostonga 35, 25 250 Odzaci, Serbia

Received 15 January 2007; revised 19 February 2007; accepted 22 February 2007Available online 6 April 2007

Abstract

Objective. The purpose of the work described in this article was to evaluate the health-related quality of life (HRQOL) of adolescentswith well-controlled epilepsy.

Methods. The Quality of Life in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) was completed by 71 subjects with uncom-plicated epilepsy who had been seizure-free for more than a year. HRQOL was measured in eight domains: Health Perception, EpilepsyImpact, Memory/Concentration, Physical Functioning, Stigma, Social Support, School Behavior, and Attitudes toward Epilepsy. Inaddition, antiepileptic drug (AED) therapy and concern over seizures recurring were analyzed in relation to HRQOL.

Results. The mean HRQOL total scores were 83.9 for boys and 83.06 for girls. The highest scores were observed in the Physical Func-tioning and School Behavior domains; the lowest in the Attitudes toward Epilepsy domain. Girls reported more positive perceptions inthe Stigma and Social Support domains. Greater intake of AEDs and concern over seizures recurring accounted for poorer HRQOL.

Conclusions. Adolescents with favorable seizure control evaluated their HRQOL as satisfactory. However, they perceived their bestadjustment to epilepsy to be in the Physical Functioning and School Behavior domains. AED intake and concern over seizures recurringwere predictors of HRQOL in this group.� 2007 Elsevier Inc. All rights reserved.

Keywords: Adolescents; Well-controlled epilepsy; Health-related quality of life; Quality of Life in Epilepsy Inventory for Adolescents 48; QOLIE-AD-48

1. Introduction

The pervasive influence of epilepsy on the daily life ofchildren and adolescents is best monitored and evaluatedwithin the concept of health-related quality of life(HRQOL) [1–5]. This concept encompasses the impact ofepilepsy on different aspects of life (e.g., cognitive andsocial functioning) related to the individual’s personalexpectations [6], and is recognized as an important out-come in clinical and research settings [2,5,6]. HRQOLhas been evaluated in diverse groups of people with epi-lepsy, and characteristics, factors, and several conceptualmodels in youth have been documented, as reviewedrecently by Ronen et al. [5], McEvan et al. [7], and Lachet al. [8].

1525-5050/$ - see front matter � 2007 Elsevier Inc. All rights reserved.

doi:10.1016/j.yebeh.2007.02.015

* Fax: +381 25 742 381.E-mail address: dejanstevanovic@eunet.yu

The majority of the studies have compared HRQOLamong different groups of adolescents with epilepsy,either uncomplicated or complicated, or between adoles-cents with epilepsy and adolescents with other chronic ill-nesses [5,8]. Not as often, though, has HRQOL beenevaluated in adolescents with uncomplicated and inactiveepilepsy or among adolescents with favorable seizurecontrol [9–18].

Active epilepsy per se places a person at risk of havingpoorer-than-expected HRQOL, and over time, HRQOLmay be perceived as better or worse depending on theoccurrence of seizures. Nevertheless, adolescents withfavorable seizure control have demonstrated betterHRQOL compared with those with refractory or intracta-ble seizures, but generally poorer HRQOL compared withchronically ill or healthy individuals [9–11,13,15,16]. Spe-cific aspects of their HRQOL have also been reported: ado-lescents with favorable seizure control report good generalquality of life, but poor self-esteem and sense of coherence

Table 1Major demographics of the sample (N = 71)

Gender

Boys 39 (54.9%)Girls 32 (45.1%)

Age

Mean 15.10SD 2.15Range 11.5–18

School grade

Mean 8.12

572 D. Stevanovic / Epilepsy & Behavior 10 (2007) 571–575

or negative sense of competence and strong effects ofsociodemographics [10–12,16,17].

This study evaluated the HRQOL of adolescents withwell-controlled, stable epilepsy. It is aimed at describingHRQOL patterns in adolescents with different seizuretypes, but favorable seizure control. For this purpose,HRQOL is defined as an individual’s capacity to functionin the physical, mental, and social domains of life, alongwith their self-perceptions, expectations, and adjustmentsto epilepsy.

SD 2.47Range 5–12

2. Methods

School achievement (average mark)

Mean 3.71SD 0.94

Seizure type

Simple partial 17.91% (13)Complex partial 20.89% (15)Generalized tonic–clonic, 13.43% (9)

secondary generalizedAbsence 17.91% (13)Myoclonic 29.86% (21)

Duration of epilepsy (years)

Mean 11.5SD 5.12Range 5–18

Age at onset

Mean 5.16SD 3.85Range 0–13

Antiepileptic drugs

None 29 (40.8%)Monotherapy 33 (46.5%)Di- or polytherapy 9 (12.7%)

2.1. Participants

Participants were recruited from the Mother and Child Health CareInstitute of Serbia and the Clinic for Neurology and Psychiatry for Chil-dren and Youth, Belgrade.

To be included, participants had to have had active, uncomplicatedepilepsy for more than 5 years, with well-controlled seizures, that is, no sei-zures for more than 1 year. Participants who had other neurological andpsychiatric disorders, major neuropsychological deficits, or any otherchronic condition; who had undergone significant therapy or EEGchanges; who had been hospitalized or institutionalized for any reasonor lived away from their parents; and who had had a failing grade ordropped out of school altogether were excluded.

During the last trimester of 2005, 150 adolescents met the criteria. Onlythose who agreed to participate and who obtained parental consent andcompleted the instrument properly were included. They numbered 71(Table 1).

2.2. The instrument

HRQOL was measured with the Serbian version of the Quality of Lifein Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) [19,20], whichincorporates a majority of domains important to the health of adolescentswith epilepsy and is the most suitable measure for youth with uncompli-cated epilepsy [21]. The QOLIE-AD-48 is a disease-specific instrumentassessing 48 items in eight domains of HRQOL: Health Perception, Epi-lepsy Impact, Memory/Concentration, Physical Functioning, Stigma,Social Support, School Behavior, and Attitudes toward Epilepsy. Theraw (5-point Likert scale) total and domain scores were translated intoscores on a 0–100 response scale, with higher scores indicating betterHRQOL.

In addition, the level of concern over seizures recurring, epilepsy con-cern (‘‘Are you worried about having seizures again?’’), was measured on a0–100 response scale, where higher scores indicated less concern.

2.3. The analysis plan

First, HRQOL total and domain scores were analyzed descriptively.Means and standard deviations with confidence intervals (CIs) and per-centiles for both genders were calculated.

Second, multivariable analysis involved t tests, Pearson’s correlationcoefficients, and linear regression analysis. The t tests were used to analyzethe differences between the HRQOL scores in this study and comparethem with those reported for adolescents without seizures during the pre-ceding year in Cramer et al. [19]. Pearson correlations evaluated relation-ships between the total and domain scores. Stepwise linear regressionanalysis was performed to test the influence of gender, age, school achieve-ment, number of AEDs taken, and epilepsy concern on HRQOL. In theanalysis, total and domain scores on the QOLIE-AD-48 were dependentvariables, and every variable that significantly deviated from the normaldistribution was logarithmically transformed.

3. Results

Mean QOLIE-AD-48 scores ranged from 69.98 for theAttitudes toward Epilepsy domain to 93.57 for the SchoolBehavior domain (Table 2), and the 95% CI was57.22–95.94. The standard deviations indicated a consider-able range of response, particularly higher in the Stigma,Epilepsy Impact, Social Support, and Attitudes towardEpilepsy domains. Compared with the scores reported forthe adolescents without seizures in the study of Crameret al. (mean ± SD = 77.3 ± 12.6) [19], the scores in thissample differed significantly (t = 4.74, P < 0.001).

As for gender, there were no significant differences inHRQOL between boys and girls, but in the EpilepsyImpact domain, girls reported significantly differently withrespect to perception of the effects of epilepsy. In addition,the 50th percentile of the HRQOL reflected greater differ-ences between the sexes in the Social Support domain,and this domain was only significantly correlated withHRQOL total score (Table 3).

Epilepsy concern (mean = 82.04, SD = 24.3) was inver-sely correlated with all HRQOL scores, indicating that

Table 2QOLIE-AD 48 scores (N = 71)

HRQOL domain Mean (SD) 95% CI Percentile

25th 50th 75th

Total score 83.52 (11.61)Boys 83.9 (10.56) 80.47–87.33 79.25 86.45 91.92Girls 83.06 (12.92) 78.4–87.72 74.14 89.31 93.22

Health perception 81.42 (14.98)Boys 82.1 (14.7) 77.32–86.86 75 81.25 93.75Girls 80.6 (15.5) 75.02–86.19 73.2 84.37 91.95

Epilepsy impact* 85.23 (15.61)Boys 87.41 (11.5) 83.66–91.14 82.3 91.67 95.83Girls 82.6 (19.34) 75.62–89.57 70.83 93.13 95.83

Memory/

concentration

83.49 (14.55)

Boys 83.78 (14.62) 79.04–88.52 75 87 95Girls 83.12 (14.69) 77.82–88.42 75 87 93.75

Physical

functioning

91.69 (11.52)

Boys 91.9 (10.74) 88.44–95.4 87.5 95 100Girls 91.4 (12.59) 86.86–95.94 90 95 100

Stigma 82.96 (19.4)Boys 81.1 (21.21) 74.21–87.96 66.67 88.89 100Girls 85.24 (16.97) 79.12–91.36 69.44 94.44 100

Social support 74.78 (20.18)Boys 71.19 (22.27) 63.97–78.4 56.25 75 87.5Girls 79.15 (16.62) 73.16–85.14 65.62 84.37 90.62

School behavior 93.57 (11.86)Boys 94.39 (10.80) 90.88–97.89 93.75 100 100Girls 92.57 (13.13) 87.84–97.31 87.5 100 100

Attitudes toward

epilepsy

69.98 (26.59)

Boys 72.27 (25.84) 63.89–80.65 50 81.25 93.75Girls 67.18 (27.63) 57.22–77.15 50 75 87.25

* F = 8.01, P = 0.006.

D. Stevanovic / Epilepsy & Behavior 10 (2007) 571–575 573

the subjects who were less concerned that seizures wouldrecur reported better HRQOL.

In the regression analysis, number of AEDs taken wasrevealed as the most significant predictor in all domainsstudied (Table 4); variance was additionally explained byepilepsy concern in the Epilepsy Impact, Physical Func-tioning, Stigma, School Behavior, and Attitudes towardEpilepsy domains. Female sex appeared to be a third pre-dictor in the variance model of Epilepsy Impact. None ofthe other variables significantly contributed to the variancein HRQOL.

4. Discussion

Overall HRQOL among adolescents with favorable sei-zure control, as reported on the QOLIE-AD-48, was gener-ally good to satisfactory. As a group, the participantsperceived their current health and adjustments to epilepsypositively, although there was great variance betweensubjects.

The highest scores were observed in the School Behaviorand Physical Functioning domains; scores in the HealthPerceptions, Epilepsy Impact, Stigma, and Memory/Con-centration domains were not as high; and the lowest scoreswere in the Social Support and Attitudes toward Epilepsydomains. At the 50th percentile, these scores were consider-ably high, indicating good overall HRQOL. Nevertheless,some domains manifested significant variance in theHRQOL evaluation—Stigma, Epilepsy Impact, SocialSupport, and Attitudes toward Epilepsy—indicating signif-icant differences in health status adjustments between thesubjects.

In the Epilepsy Impact domain, significant variance inthe scores was observed among girls; the boys generallyhad higher and less variable scores. Girls perceived lessstigma and reported better social support and conduct,but the differences in these HRQOL domains were not sig-nificant. Adolescent females with well-controlled seizureshad previously reported slightly poorer quality of life andless favorable adjustment to epilepsy [5,10,15], but bothgenders reported good adjustment and coping in theStigma and Attitudes toward Epilepsy domains[12,14,22]. Compared with results from other studies usingthe QOLIE-AD-48, this sample had a significantly betterHRQOL total score than the sample from the study of Cra-mer et al. [19] and a slightly better HRQOL total scorethan the sample from the study of Benavente-Aguilaret al. [17]. Apart from cultural differences and socioeco-nomic development, this could be explained by a longerseizure-free period and good adjustment to epilepsy.

On the basis of the results of the regression analysis, AEDintake, epilepsy concern, and gender were found to be pre-dictors of HRQOL. Generally, the larger the number ofAEDs taken and the higher the concern over seizures recur-ring, the poorer the perception of HRQOL. Nearly 60% ofthe variance in the total score could be explained by numberof AEDs and epilepsy concern. Only number of AEDs couldexplain the variance in the Health Perception, Social Sup-port, and Memory/Concentration domains, and, along withepilepsy concern, number of AEDs was responsible for thevariance in the Physical Functioning, Stigma, SchoolBehavior, and Attitudes towards Epilepsy scores. Finally,the model that included gender (female), number of AEDs,and epilepsy concern explained the variance in the EpilepsyImpact scores. The analysis revealed that age and schoolachievement are not predictors of HRQOL in adolescentswith favorable seizure control. Contrarily, the predictorsof HRQOL among adolescents with different types of epi-lepsy were age, gender, seizure severity, and neurotoxicity[15–18], with girls and older youth experiencing poorer qual-ity of life, poorer self-esteem, less competence, and pooreradjustment to epilepsy [8,15].

All these findings imply that the subjects’ HRQOL iscompromised with respect to social aspects and conduct,causing them to develop generally poorer attitudes towardtheir epilepsy compared with the other domains of impor-tance. In addition, Social Support was not significantly

Table 3Correlations between HRQOL total and domain scores (N = 71)a

HRQOL domain 1 2 3 4 5 6 7 8

1. Total score —2. Health perception 0.49* —3. Epilepsy impact 0.86* 0.40* —4. Memory/concentration 0.65* 0.35* 0.44* —5. Physical functioning 0.66* 0.51* 0.62* 0.56* —6. Stigma 0.6* 0.25* 0.57* 0.25* 0.28* —7. Social support 0.32* 0.04 0.16 0.12 0.13 �0.02 —8. School behavior 0.62* 0.43* 0.57* 0.55* 0.56* 0.24* 0.08 —9. Attitudes toward epilepsy 0.67* 0.27* 0.60* 0.33* 0.38* 0.42* 0.04 0.23*

a Asterisks indicate correlations significant at the 0.05 or higher level (two-tailed).

Table 4HRQOL total and domain score variance explained by the mostsignificant predictors

HRQOL domain Standardizedestimate

F value Variance (%)

b P

Total score

AEDs 0.28 <0.001 45.78 57Epilepsy concern �0.006 <0.001

Health perception

AEDs 0.32 <0.001 17.84 20

Epilepsy impact

AEDs 0.27 <0.001 25.25 53Epilepsy concern �0.008 <0.001Gender 0.15 0.046

Memory/concentration

AEDs 0.41 <0.001 38.5 60

Physical functioning

AEDs 0.38 <0.001 17.88 34.5Epilepsy concern �0.006 0.03

Stigma

AEDs 0.233 <0.001 15.47 31Epilepsy concern �0.01 0.042

Social support

AEDs 0.23 0.023 5.37 7

School behavior

AEDs 0.32 <0.001 20.5 38Epilepsy concern �0.009 <0.001

Attitudes toward Epilepsy

Epilepsy concern �0.01 <0.001 9.45 22AEDs 0.27 0.038

574 D. Stevanovic / Epilepsy & Behavior 10 (2007) 571–575

correlated with the other domains, except for HRQOLtotal score, which may indicate a secondary role in the con-cept of HRQOL or in the development of some copingstrategies apart from the environment where theybelonged. Low scores for the Attitudes towards epilepsy

reflect insufficient knowledge about seizures and epilepsyamong the subjects, what could significantly affect the per-ceiving of the HRQOL and everyday functioning. Anotherimportant finding was that, despite being seizure-free, thesubjects remained concerned over seizure recurrence, whichstrongly influenced their adjustment to epilepsy and per-ception of their HRQOL. On the other hand, physical

health and condition were perceived as the most satisfac-tory in the HRQOL, along with good school behaviorand adaptation. This indicates that school may be animportant factor in HRQOL and, together with good phys-ical health, may be the best indicator of favorable seizurecontrol. Finally, good general health, improved function-ing in some aspects of cognition (memory and concentra-tion), and good adjustment to stigma and the impact ofepilepsy were important in coping well with epilepsy.

In the theoretical model of HRQOL in youth with epi-lepsy suggested recently [8], the domains studied here arerepresented on the level of impairment (e.g., AEDs) andas intermediate variables. However, it is advisable to con-sider stigma and attitudes toward epilepsy as separateintermediate variables, because these domains haveimportant influence on HRQOL evaluation and epilepsyadjustment in adolescents with favorable seizure control.

The study has some limitations. It is cross-sectional andno group comparisons were made, the number of subjectswas small, the sample was highly homogenous because ofthe study criteria, and only one measure was used, all ofwhich may limit future use of the data. One particularlimitation was that a great majority of past studies evalu-ated quality of life, rather than health-related quality oflife, in adolescents with well-controlled epilepsy, whichmay compromise proper comparison of the findings.

In conclusion, this study evaluated HRQOL amongadolescents with well-controlled epilepsy, especially in thedomains of physical functioning and school behavior. Gen-der differences were noted in the perception of epilepsyimpact, whereas only number of AEDs and epilepsy con-cern were strongly associated with HRQOL. However,there was great variance among the subjects in their evalu-ation and perception of HRQOL and their adjustment totheir epilepsy, which indicates the need for individualapproaches in evaluation, so that the subjects can betterunderstand their self-perceptions and expectations abouttheir well-being [23].

Acknowledgments

I thank Professor Nebojsa Jovic and Dr. Milan Borko-vic for their generosity in helping me with the participants.

D. Stevanovic / Epilepsy & Behavior 10 (2007) 571–575 575

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