The Vietnamese version of the health-related quality of life measure for children with epilepsy (CHEQOL-25): Reliability

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MedPharmRes, 2017, 1  
MedPharmRes  
journal of University of Medicine and Pharmacy at Ho Chi Minh City  
Original article  
The Vietnamese Version of the Health-related Quality of Life Measure for  
Children with Epilepsy (CHEQOL-25): Reliability  
Doan Huu Tria, Tran Diep Tuanb*, Nguyen Bao Huu Hanb  
aTheCenterforAdvancedTraininginClinicalSimulation,UniversityofMedicineandPharmacyatHoChiMinhCity,Vietnam;  
b Department of Pediatrics, University of Medicine and Pharmacy at Ho Chi Minh City, Vietnam.  
Received August 25, 2017: Accepted September 24, 2017 Published online December 10, 2017  
Abstract: Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related  
Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability.  
Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally  
adapted into Vietnamese by using the Principles of Good Practice for the Translation and CulturalAdaptation Process.  
The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at  
neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was  
versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to  
for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and  
0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the  
range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and  
Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.  
Keywords: childhood epilepsy, quality of life, health-related quality of life, CHEQOL-25 instrument  
1. INTRODUCTION  
Epilepsy is a chronic disease affecting humans since  
ancient times and up to now, it remains as one of the  
diseases that causes the most severe disabilities. Epilepsy  
affects patients’ activities as well as their family for a long  
In recent years, clinicians have paid more attention to  
the health-related quality of life (HrQOL) issue of patients  
with epilepsy and developed various instruments to assess  
this factor. There are many studies on how to measure  
HrQOL in adult and children with epilepsy in the world.  
Recently, measurements of HrQOL have been accepted  
to take not only a descriptive role but also instrument to  
lives [1]. Children with epilepsy are often more affected  
psychologically and socially than children with asthma  
although both are chronic diseases [2]. This shows that such  
problems in children with epilepsy are not merely caused  
by their living with a chronic medical condition [3]. Current  
studies on epilepsy in the world in general and in Vietnam  
in particular mostly still revolves around such classic  
problems as pathophysiology or treatment effects without  
paying adequate attention to the patients’ quality of life [4,  
5]. Evaluation of epileptic patientslives provides important  
information related to treatment and helps to improve  
treatment quality [6].  
and management of epilepsy in patients [7].  
Quality of life, in general, is considered a social  
category, which is ruled by each country’s culture, tradition,  
and ideology. Therefore, results from the studies of other  
countries cannot absolutely apply to Vietnam society.  
In Vietnam today, there is still not a Vietnamese version  
of measurement of HrQOL in epileptic patients to be  
utilized locally. Among instruments have been developed  
* Address correspondence to this author at the Department of Pediatrics,  
University of Medicine and Pharmacy, 217 Hong Bang street, District 5,  
Ho Chi Minh City, Vietnam; E-mails: dieptuan@ump.edu.vn  
© 2017 MedPharmRes  
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MedPharmRes, 2017, Vol. 1, No. 1  
Doan et al.  
and validated to assess the quality of life of children with  
epilepsy, the Quality-of-life Measure for Children with  
Epilepsy (CHEQOL-25) of Gabriel M. Ronen et al [8] have  
many advantages: (1) psychometric properties are fully  
proven, (2) both version for parent-proxy and self-report  
are available, (3) special structure with alternative paired  
options of forced responses that have been developed by  
Harter for “The Perceived Competence Scale for Children”  
help this instrument more appropriate, more feasible to  
administer and show less response bias than the traditional  
Likert scales [8]. This measurement has been translated and  
adapted into many languages in countries and territories  
such as Hong Kong [9, 10], Malaysia [11], etc. Therefore,  
we decided to translate and cross-culturally adapt this  
instrument into Vietnamese and assess the reliability of the  
translated versions.  
Vietnamese were performed according to the Principles of  
Good Practice for the Translation and Cultural Adaptation  
of Patient-Reported Outcomes Measures of International  
Society for Pharmacoeconomics and Outcomes Research  
(ISPOR), which included preparation, forward translation,  
reconciliation, back translation, back translation review,  
We developed two independent forward translations  
and all forward translators, one is a member of the study  
group and the other is English expert without knowledge  
about medicine, were native speakers of Vietnamese.  
Reconciliation of these forward translations into a single  
forward translation resolved discrepancies between the  
translationsandsoughtagreementbetweenindividualspeech  
habits and preferences [13]. From the reconciled translation,  
two Vietnamese translators developed two independent back  
translations. The review of the back translations to ensure  
the conceptual equivalence of the translation involved Prof.  
Gabriel M. Ronen – the author of the original instrument.  
2. METHODS  
2.1. Methods and design  
with epilepsy and their parents/caregivers at neurology  
outpatient clinic of Children Hospital No. 2 – Ho Chi Minh  
City. Participants were requested to read the questions and  
We selected epileptic patients in the age ranging from 8  
to 15 years old with epilepsy duration greater than 6 months,  
normal psychomotor development for their age, and without  
other chronic diseases. Patients and their parents/caregivers  
had an ability to read and understand Vietnamese, and agree  
to participate in the research. The study was performed at  
neurology outpatient clinic of Children Hospital No. 2 – Ho  
Chi Minh City.  
structure of each item and give feedback about the clarity  
and appropriateness of all items.  
2.3. Data collection  
Research approval was obtained from the Ethics  
Committee of University of Medicine and Pharmacy at Ho  
Chi Minh City, Vietnam.  
Potential patients were screened and the ones who  
explained about study’s objectives, methodology and  
conditions of participation, the patients’ parents/caregivers  
would sign the informed consent if they agreed to take part  
in the research.  
2.2. Translation and cultural adaptation the measurement  
The instrument which was used to assess the HrQOL of  
children with epilepsy in our research was CHEQOL-25 of  
Ronen et al [12]. One of the advantages of this measurement  
is the inclusion of both self-report version for the child and  
parent-proxy version for their parents/caregivers. Each  
Parents/caregivers were instructed to complete  
questionnaire including three parts: demographic  
a
information, characteristics of epilepsy disease and the  
patient’s quality of life using parent-proxy CHEQOL-25  
measurement. Patients were instructed separately to  
complete a self-report CHEQOL-25 measurement in  
another room away from their parents/caregivers. The  
researcher was always available to ensure all the questions  
on the questionnaire were understood clearly and completed  
by the participants.  
subscales. The score range for each item is 1-4 and for total  
score is 25-100. The higher the score of scale, the better  
HrQOL was children with epilepsy. Subscales of each  
version were presented in Table 1.  
Table 1. Subscales of the parent-proxy and child self-report  
version of CHEQOL-25  
and the second time was four weeks later. We used the same  
CHEQOL-25 measurement for both times.  
Item  
1-5  
Parent-proxy  
Interpersonal/Social  
Present worries  
Self-report  
Interpersonal/Social  
Present worries  
2.4. Data analysis  
6-10  
11-15  
16-20  
21-25  
Future worries  
Intrapersonal/Emotional  
Epilepsy secrecy  
Data entry and statistical analysis were conducted using  
Microsoft Excel 2013 and SPSS version 23.0.  
Intrapersonal/Emotional  
Epilepsy secrecy  
Internal consistency of each subscale was measured  
Quest for normality  
Permission for translation was obtained from  
McMaster University in November 2016 (via email with  
a representative). The license of using the instrument was  
purchased on December 1st, 2016.  
of items [14]. Items in each subscale were assessed by  
corrected item-total correlation. Items with corrected  
item-total correlation from 0-0.19 may indicate that the  
question is not discriminating well, from 0.2-0.39 indicate  
good discrimination and greater than 0.4 indicate very good  
discrimination.  
The translation and cross-cultural adaptation of the  
original version of the CHEQOL-25 measurement to  
The Vietnamese version of the health-related  
MedPharmRes, 2017, Vol. 1, No. 1  
11  
Test-retest reliability or reproducibility was analyzed  
rate: 80.2%). In the second assessment four weeks later,  
there was 16 patients lost communication. Therefore, a  
total of 77 patients administered twice and included in this  
The closer the ICC value is to 1.0, the better the test-retest  
reliability. ICC values > 0.75 indicate high reliability, from  
0.5-0.75 indicate medium reliability, and < 0.5 indicate  
low reliability [15]. Similar research accepted ICC value  
higher than 0.7 or 0.6 [8, 10]. In this research, we accepted  
and the demographic as well as epilepsy characteristics of  
the sample were shown in Table 2.  
a subscale with ICC higher than 0.6.  
ICC was also used to determine the level of agreement  
between parent-proxy and self-report version [12, 16].  
moderate agreement, 0.61–0.80 as good agreement, and  
0.81–1.00 as excellent agreement [12].  
3. RESULTS AND DISCUSSION  
3.1. Results  
inclusion criteria, 23 patients declined participation and 93  
Figure 1. Flow of participants  
Table 2. Characteristics of the sample  
Characteristic  
N
% (n = 77)  
Type of parent  
Mother  
33  
14  
5
63.5  
26.9  
9.6  
Father  
Other  
Level of education of parents/caregiver  
Primary education  
13  
18  
18  
3
25.0  
34.6  
34.6  
5.8  
Secondary education  
High school  
Undergraduate  
Graduate  
0
0
Child’s Gender  
Male  
40  
37  
51.9  
48.1  
Female  
Mean age of the child with epilepsy ± SD (years) [range]  
10.67 ± 1.84 [8-14]  
Seizure type  
Generalized tonic-clonic  
Partial  
40  
25  
6
51.9  
32.5  
7.8  
Absence  
Others  
6
7.8  
Seizure frequency  
Almost daily  
4
5.2  
6.5  
Once a week or more frequently  
Several times a month  
Several times a year  
Not occurred  
5
10  
17  
41  
13.0  
22.1  
53.2  
Number of antiepileptic drugs  
1
59  
14  
4
76.6  
18.2  
5.20  
2
SD = standard deviation  
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MedPharmRes, 2017, Vol. 1, No. 1  
Doan et al.  
The descriptive statistics of Vietnamese version were shown in Table 3.  
Table 3. Descriptive statistics of the CHEQOL-25 subscales for parents and children  
Mean (SD)  
Skewness (SE)  
Kurtosis (SE)  
Range  
Subscale  
Parent  
Child  
Parent  
Child  
Parent Child  
Parent  
6-19  
Child  
9-20  
Interpersonal/Social  
Present worries  
12.97  
(4.08)  
12.26  
(3.95)  
13.42  
(3.79)  
10.75  
(3.28)  
15.01  
(3.65)  
11.44  
(3.54)  
-0.28  
(0.27)  
0.09  
-0.22  
(0.27)  
0.29  
-1.23  
(0.54) (0.54)  
-1.14 -0.58  
-1.35  
5-20  
7-20  
5-18  
5-20  
(0.27)  
-0.27  
(0.27)  
0.00  
(0.27)  
(0.54) (0.54)  
-1.25  
(0.54)  
Future worries  
Intrapersonal/Emotional  
14.30  
(3.34)  
-0.70  
-1.02  
(0.54) (0.54)  
-1.00 -1.10  
-0.13  
6-20  
(0.27)  
(0.27)  
Epilepsy secrecy  
10.96  
(3.90)  
10.62  
(3.33)  
13.65  
(3.66)  
0.54  
(0.27)  
0.16  
(0.27)  
0.46  
5-19  
6-17  
9-20  
(0.54) (0.54)  
Quest for normality  
-1.13  
(0.54)  
(0.27)  
In the self-report version, both the “Present Worries” and  
subscale was greater than 0.7. The subscale with the lowest  
and 0.681, respectively, whereas, for the other scales, this  
correlation value of > 0.2 (Table 4).  
(0.847). All items had a corrected item-total correlation  
value of > 0.2 (Table 4)  
Table 4.  
Parent-proxy  
Self-report  
Subscale  
Corrected item-total  
correlation  
Corrected item-total  
Item  
Item  
correlation  
1
2
3
4
5
1
2
3
4
5
0.661  
0.641  
0.696  
0.682  
0.338  
0.847  
0.826  
0.844  
0.841  
0.862  
0.699  
0.589  
0.602  
0.625  
0.581  
0.883  
0.651  
Interpersonal/Social  
6
7
6
7
0.689  
0.572  
0.391  
0.516  
0.531  
0.653  
0.610  
0.244  
0.634  
0.578  
8
8
Present worries  
9
9
10  
10  
11  
12  
13  
14  
15  
0.698  
0.540  
0.572  
0.644  
0.633  
Future worries  
16  
17  
18  
19  
20  
11  
12  
13  
14  
15  
0.550  
0.338  
0.445  
0.376  
0.628  
0.715  
0.363  
0.637  
0.413  
0.456  
0.783  
0.681  
0.873  
Intrapersonal/Emotional  
Epilepsy secrecy  
21  
22  
23  
24  
25  
16  
17  
18  
19  
20  
0.606  
0.616  
0.494  
0.573  
0.573  
0.563  
0.648  
0.367  
0.438  
0.524  
21  
22  
23  
24  
25  
0.711  
0.590  
0.496  
0.640  
0.694  
Quest for normality  
13  
The Vietnamese version of the health-related  
MedPharmRes, 2017, Vol. 1, No. 1  
Table 5.  
Parent-proxy  
ICC  
Self-report  
Subscale  
ICC  
p
p
Interpersonal/Social  
Present worries  
0.98  
0.86  
0.77  
0.86  
0.87  
< 0.001  
< 0.001  
< 0.001  
< 0.001  
< 0.001  
0.76  
0.80  
< 0.001  
< 0.001  
Future worries  
Intrapersonal/Emotional  
Epilepsy secrecy  
0.61  
0.86  
0.67  
< 0.001  
< 0.001  
< 0.001  
Quest for normality  
Regarding the test-retest reliability, Table 5 shows that  
the ICC for each subscale of the parent-proxy and self-report  
CHEQOL-25 was in the range of 0.77 to 0.98 and 0.61 to  
0.44 in Serbian version of Stevanovic [16] and 0.67 in the  
Malay version of Wo [11]. According to Wo et al., the reason  
lead to this may be because the subscale widely assessed  
many different worries of the child, such as “think about  
their epilepsy before doing things” (item 6), “their parents  
are worried that they will hurt themselves” (item 7), “may  
not be able to go away to camp or similar places” (item 8),  
and “worry about getting hurt during a seizure” (item 10).  
Therefore, the internal consistency of this subscale was not  
as good as another subscale [11]. The corrected item-total  
correlation values of all items were > 0.2 which indicate  
for all subscales of each version.  
Moreover, with ICC between parent-proxy and self-  
report version ranging from 0.35 to 0.62, most of the  
subscales had an acceptable level of agreement in the rating  
HrQOL of patients and their parents/caregivers, except for  
“Intrapersonal /Emotional” subscale (Table 6).  
Table 6. ICCs between parent and child on the CHEQOL-25  
Regarding the test-retest reliability, our data showed that  
subscales  
0.6. The result revealed that the score of a parent-proxy version  
of Vietnamese CHEQOL-25 was stable in 4-week interval.  
Subscale  
ICC  
0.62  
0.66  
0.35  
0.44  
p
Interpersonal/Social  
Present worries  
Intrapersonal/Emotional  
Epilepsy secrecy  
< 0.001  
< 0.001  
0.001  
3.2.2 Reliability of self-report CHEQOL-25  
We found that the subscales of self-report version did  
not achieve a good reliability like the parent-proxy one. The  
“Present worries” and “Epilepsy secrecy” subscale had the  
< 0.001  
3.2. Discussion  
This was identical with previous research. In the original  
In this research, the Vietnamese translation of the  
CHEQOL-25 was performed according to international  
guidelines [13]. Backward translation review for  
Vietnamese versions of CHEQOL-25 measurement was  
performed by Professor Gabriel M. Ronen of McMaster  
of these subscales were 0.71 and 0.63, respectively [8]. In  
the Serbian version of Stevanovic, the internal consistency  
on 5 patients to assess comprehensibility, clarity, and  
appropriateness of each item. The content of each item was  
familiar with Vietnamese people so no changes necessary.  
The questions’ structure with Harter’s format was special  
and uncommon to most research participants. However,  
uncorrelated item may not be covered by the remaining  
items. Elimination of some questions to elevate the value of  
In addition, similar to parent-proxy version, the corrected  
item-total correlation value of most items was> 0.4. The  
lowest corrected item-total correlation was also greater  
than 0.2. This indicated that the discrimination of all items  
in the self-report version was good to very good. Hence,  
we decided to keep all items in the Vietnamese self-report  
version like original instruments.  
remaining questions were completed without any problem.  
This indicated our Vietnamese version measurement reaches  
semantic and content equivalence to the original version.  
3.2.1. Reliability of parent-proxy CHEQOL-25  
Test-retest reliability analysis revealed that the child  
self-report version showed good reproducibility with ICCs  
of all subscales were greater than 0.6. The “Interpersonal/  
Social”, “Present worries” and “Epilepsy secrecy” subscale  
were most stable and concrete with highest ICC (0.76, 0.80  
and 0.86, respectively). For both the “Intrapersonal/Emo-  
tional” and “Quest for normality” subscales, the ICC was  
values > 0.7, which indicate that all subscales had very good  
internal consistency. The higher Cronbach’s alpha showed  
the higher correlation between items on the subscale, and  
hence the internal consistency was also higher. The lowest  
(0.826). The previous translation and cultural adaptation  
research of the CHEQOL-25 also showed that “Present  
condition greater than 0.6 of an acceptable subscale. This  
result was similar to that of the English version of Ronen  
remaining subscales: 0.72 in the Chinese version of Yam [9],  
14  
MedPharmRes, 2017, Vol. 1, No. 1  
Doan et al.  
et al. with the ICC of these subscales were 0.63 and 0.65,  
respectively.  
CONFLICT OF INTEREST  
REFERENCE  
3.2.3 Agreement of parent-proxy and child self-report  
CHEQOL-25  
1. Ovšonková A, Mahútová Z. The quality of life for children with  
epilepsy. The Central European Journal of Nursing and Midwifery.  
2014;5(1):9-14.  
Our data showed that there was an acceptable level  
of agreement between parent-proxy version and the child  
self-report version with most of ICCs ranging from 0.44 to  
0.66, which indicate moderate to good agreement, except for  
the “Intrapersonal/Emotional” subscale. The “Interperson-  
al/Social” and “Present worries” subscale had the highest  
agreement with ICCs value were 0.62 and 0.66, respective-  
ly. Meanwhile, the “Intrapersonal/Emotional” and “Epilep-  
sy secrecy” subscales had a higher degree of discrepancy.  
This difference might be explained by the literature which  
suggests that emotion are harder observed than physical  
performance, hence good agreement is usually obtained  
between parent and child when assess physical aspects of  
HrQOL [12]. Despite the differences between perspectives  
of parent and child, the aforementioned result of ICCs indi-  
cated that Vietnamese parent form of CHEQOL-25 could be  
used as proxy measure for HrQOL of children with epilepsy  
in connection with the child self-report version or when the  
self-report version could not be administered.  
2. J. K. Austin, M. S. Smith, M. W. Risinger, A. M. McNelis. Childhood  
epilepsy and asthma: comparison of quality of life. Epilepsia.  
1994;35(3):608-15.  
3. G. M. Ronen, D. L. Streiner, P. Rosenbaum. Health-related quality  
of life in childhood epilepsy: Moving beyond ‘seizure control with  
minimal adverse effects. Health Qual Life Outcomes. 2003;1(36).  
4. J. Nadkarni, A. Jain, R. Dwivedi. Quality of life in children with  
epilepsy. Ann Indian Acad Neurol. 2011;14(4):279-82.  
5. D. Talarska. The usefulness of Quality of Life Childhood Epilepsy  
(QOLCE) questionnaire in evaluating the quality of life of children  
with epilepsy. Adv Med Sci. 2007;52:191-3.  
6. A. Aggarwal, V. Datta, L. C. Thakur. Quality of Life in Children with  
Epilepsy. Indian Pediatrics. 2011;48(11):893-6.  
7. A. Jacoby. Assessing quality of life in patients with epilepsy.  
PharmacoEconomics. 1996;9(5):399-416.  
8. G. M. Ronen, D. L. Streiner, P. Rosenbaum. Health-related quality  
of life in children with epilepsy: development and validation of self-  
report and parent proxy measures. Epilepsia. 2003;44(4):598-612.  
3.2.4 Limitations  
9. W. K. Yam, S. M. Chow, G. M. Ronen. Chinese version of the parent-  
proxy health-related quality of life measure for children with epilepsy:  
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Behav. 2005;7(4):697-707.  
Our research had some limitations. The sample size was  
small, factor analysis was not conducted to assess construct  
validity, and no other HrQOL Vietnamese measurement was  
available to test validity. Therefore, when another Vietnam-  
ese measurement of HrQOL for children with epilepsy is  
available, we need to do this research again with a larger  
sample size to assess fully validity of Vietnamese versions  
of CHEQOL-25.  
10. K. H. Ma, K. L. Yam, K. W. Tsui, F. T. Yau. Internal consistency and  
test-retest reliability of the Chinese version of the self-report health-  
related quality of life measure for children and adolescents with  
epilepsy. Epilepsy Behav. 2006;9(1):51-7.  
11. S. W. Wo, P. S. Lai, L. C. Ong, W. Y. Low, K. S. Lim, C. G. Tay, et  
al. Cross-cultural adaptation of the Malay version of the parent-proxy  
Health-Related Quality of Life Measure for Children with Epilepsy  
(CHEQOL-25) in Malaysia. Epilepsy Behav. 2015;45:118-23.  
4. CONCLUSION  
In summary, we translated and cross-culturally adapted  
the CHEQOL-25 instrument into Vietnamese with both  
versions for parent and child scoring. This research reported  
that our Vietnamese versions were easy to comprehend,  
feasible to administer, and equivalent to the original version  
of semantic and content. Both parent-proxy and self-report  
version had adequate good at internal consistency and test-  
retest reliability to assess HrQOL in Vietnamese children  
with epilepsy.  
12. W. K. Yam, G. M. Ronen, S. W. Cherk, P. Rosenbaum, K. Y. Chan,  
D. L. Streiner, et al. Health-related quality of life of children with  
epilepsy in Hong Kong: how does it compare with that of youth with  
epilepsy in Canada? Epilepsy Behav. 2008;12(3):419-26.  
13. D. Wild, A. Grove, M. Martin, S. Eremenco, S. McElroy, A. Verjee-  
Lorenz, et al. Principles of Good Practice for the Translation and  
Cultural Adaptation Process for Patient-Reported Outcomes (PRO)  
Measures: report of the ISPOR Task Force for Translation and Cultural  
Adaptation. Value Health. 2005;8(2):94-104.  
alpha and internal consistency. Journal of personality assessment.  
2003;80(1):99-103.  
ACKNOWLEDGEMENTS  
We would like to thank all the children and their par-  
ents who participated in this study. We are grateful to all the  
physicians and nurses of Neurology Department of Children  
Hospital No. 2 – Ho Chi Minh City for their assistance. We  
thank Dr. Gabriel M. Ronen in assisting us in translating  
the instrument. The use of the Health-related Quality of  
Life Questionnaire in Children with Epilepsy, authored  
by Dr. Gabriel Ronen et al., was made under license from  
McMaster University, Hamilton, Canada.  
15. A. Fletcher, S. Gore, D. Jones, R. Fitzpatrick, D. Spiegelhalter, Cox  
D. Quality of life measures in health care. II: Design, analysis, and  
interpretation. BMJ : British Medical Journal. 1992;305(6862):1145-8.  
16. D. Stevanovic, D. K. Tepavcevic, B. Jocic-Jakubi, M. Jovanovic, T.  
Pekmezovic, A. Lakic, et al. Health-Related Quality of Life Measure  
for Children with Epilepsy (CHEQOL-25): preliminary data for the  
Serbian version. Epilepsy Behav. 2009;16(4):599-602.  
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