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 patients’lives 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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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
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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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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
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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],
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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.
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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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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-
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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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