Acta Neurol Scand 2006: 113: 167173 DOI: 10.1111/j.1600-0404.2005.00567.
x
2006 The Authors
Factors aecting the quality of life in
childhood epilepsy in China
Yong L, Chengye J, Jiong Q. Factors affecting the quality of life in
childhood epilepsy in China.
Acta Neurol Scand 2006: 113: 167173

2006 The Authors Journal compilation
2006 Blackwell Munksgaard.
Objectives To explore the level of, and factors aecting the quality of
life (QOL) in childhood epilepsy in China. Subjects and methods At
the Peking University First Hospital, we consecutively identied 418
parents whose children were with known epilepsy to complete a
questionnaire, which included childrens demographic characteristics,
clinical message of epilepsy, QOL, familial message, parental
symptoms of anxiety/depression. Results Signicant (p<0.05)
aecting factors of childrens quality of life included current
educational degree, mental development, age at diagnosis, age at onset,
seizure frequency, duration, AED number; parental signicant
(p<0.05) aecting factors included anxiety, depression and health. On
regression analysis, parental anxiety was the most important factor in
explaining lower QOL in childhood epilepsy. AEDs, familial economic
state, paternal career, seizure frequency were also signicant
factors. Conclusion Parental anxiety outweighed the physical factors
in determining QOL in childhood epilepsy. Recognition of this will be
helpful for professionals to treat disease and improve the QOL of
childhood epilepsy.
Although it is one of the most common brain
disorders, epilepsy is often misunderstood. It is
now widely acknowledged that people with epi-
lepsy are as likely to be distressed by social and
cultural problems as they are by continuing
seizures (1). Epilepsy is both a medical diagnosis
and a social label; and the latter aspect can
exacerbate handicap in patients with epilepsy, for
example by prejudicing job applications and impo-
sing other psychosocial restrictions (2).
The measurement of health-related quality of life
(HRQoL) of people with various chronic condi-
tions has been the focus of a signicant body of
social scientic research over the past 20 years (3).
Quality of life (QoL) refers to patients evaluation
of the quality of their lives as it relates to their own
expectations. The balance between perceived and
desired status is considered as being the essence of
QoL (4). So far seizure frequency, seizure type,
negative effect of antiepileptic drug (AED) and
social bias were the afrmative factors affecting the
QoL of children with epilepsy (58). The uncertain
factors included the psychological adjustment of
Journal compilation
2006 Blackwell Munksgaard
ACTA NEUROLOGICA
SCANDINAVICA
L. Yong1, J. Chengye1, Q. Jiong2
1
Institute of Child and Adolescent Health, Peking
University, Beijing, China; 2Department of Pediatrics,
Peking University First Hospital, Beijing, China
Key words: brain disorder; child; China; epilepsy;
factor; quality of life
Ji Chengye, Institute of Child and Adolescent Health,
Peking University, Xue yuan Road 38, Haidian District,
Beijing 100083, China
Tel.: +86 10 82802344
Fax: +86 10 82801178
e-mail: jichengye@263.net
Accepted for publication November 16, 2005
the children, parental adjustment, family condition
and knowledge about epilepsy (911).
Parental beliefs and attitudes concerning epi-
lepsy may signicantly impact adjustment and
QoL on both the child and family (12). But little
is known as to whether and how parental anxiety
and depression affect the QoL of children with
epilepsy (8, 1214).
The research of QoL was relatively late in China.
Public perception toward epilepsy is relatively
unfavorable. And there still is much stigma asso-
ciated with epilepsy (15). So understanding the
affecting factors and relative contributions of these
factors to QoL should be essential in the develop-
ment of counseling plans to improve the QoL of
these patients. In the present study, we attempted
to explore the level of, and factors determining the
QoL in childhood epilepsy in China.
Subjects and methods
All clinical trials were approved by the Ethics
Committee of Peking University. The research was
167
Yong et al.
carried out at the Peking University First Hospital
outpatient clinic from September 2004 to May
2005. Four hundred and eighteen parents whose
children were with known epilepsy accepted our
survey. They came from dierent areas all over the
country. Only one parent participated in our
investigation. When we found the appropriate
parent, we gave the questionnaire to him/her, and
then let him/her complete the questionnaire. We
only used questionnaire in the survey, and all the
medical data were retrieved from the parental
questionnaires. The rst author did all the
interview. The entry criteria were: children with
known epilepsy; age between 4 and 18; parents
capable of completing a questionnaire; parents
willing to participate in the survey. Classication
of seizure type referred to the proposal from ILAE
(1989) (16).
The questionnaire included: (i) demographic
data of children such as age, gender, current
educational status and mental development. (ii)
clinical data of epilepsy such as age at onset, age at
diagnosis, seizure control condition, current medi-
cation, seizure frequency, duration and type and
seizure duration; (iii) familial economic state
(personal monthly income, RMB), parental data
such as career, age, health and parental knowledge
about epilepsy; (iv) Quality of Life in Children with
Epilepsy (QoLCE) questionnaire to evaluate the
QoL of the children; (v) The Hospital Anxiety and
Depression (HAD) Scale to evaluate the emotion
of the parents. (vi) Childrens mental development
was measured by parental evaluation.
The QoLCE is a parental, multifaceted epilepsy-
specic scale for evaluating the HRQoL of children
aged 418 years. The QoLCE was developed from
an original questionnaire containing 91 items. Item
analysis and validation in North America led to a
nal questionnaire containing 76 items with 16
subscales covering seven domains of life function:
physical activities, social activities, cognition, well-
being, behavior, general health, and general QoL.
The full score is 100. The higher the score, the
better the QoL of the children (17, 18). There are
no norms or accepted ranges for QoLCE scores
because it is not widely used. In this study, QoLCE
scores were not used to dene QoL state, but only
for correlations with family characteristics. The
QoLCE has not been validated for Chinese
patients, and we translated it only for use in this
study.
The HAD Scale, made of 14 items with a 4-point
response set, seven each relating to anxiety and
depression, was used to measure parental depres-
sion and anxiety. It is a standard questionnaire.
Depression or anxiety was considered to be present
168
if the patients had a score >10 either in anxiety or
in depression inventory. Scores of 810 were
considered as indicating borderline depression/
anxiety. Scores below 8 were considered as indica-
ting no depression/anxiety (19).
Before the interview, the parents were told about
the objective of the study to guarantee that their
participation in the survey would be condential
and completely voluntary. To control the quality
of the interview, it was performed by one person.
To minimize the difculties of disclosure of their
condition to the medical personnel, we separated
parents from others to make sure that all the
information obtained from the parents as well as
relatives would be condential.
Statistics
Pearson correlation analysis was conducted using
the Statistical Package for the Social Sciences
(SPSS) version 11.5. Multiple regression analysis
was used for determining the factors affecting the
QoL (SAS statistical package, V8). Factors with
the signicance level below 0.15 were excluded (20).
Results
Of the 418 parents, 252 parents completed the
questions of HAD, and 140 parents answered the
questions about childrens mental development.
The demographic characteristics of the children
are summarized in Table 1. Of the 418 patients,
241(58%) were boys. The ratio of boys to girls was
1.36:1.The mean age was 9.0  3.6 years. Of them,
69 (17%) never went to school or dropped out, 108
(26%) were in kindergarten. Of the 140 patients
who had data of mental development, 48 (34%)
childrens mental development was abnormal.
The clinical characteristics of the children are
listed in Table 2. The mean age at onset and
Table 1 Demographic characteristics of the children with epilepsy
Characteristics Mean or number (%)
Age, mean  SD 9.0  3.6
Sex 418
Male 241 (58)
Female 177 (42)
Current educational degree 418
None and dropout 69 (17)
Kindergarten 108 (25)
Primary school 188 (45)
Junior school or higher 53 (13)
Mental development 140
Normal 92 (66)
Abnormal 48 (34)
 Quality of life in childhood epilepsy

Table 2 Clinical characteristics of the children with epilepsy Table 3 Social and familial characteristics of the children

Characteristics Mean or number (%) Characteristics n (%)

Age of onset* 4.8  3.5 Familial personal monthly income (RMB) 418
Age at diagnosis* 5.5  3.4 Low (<600) 97 (23)
Type of seizure Middle (6002000) 182 (44)
Partial 161 (39) High (>2000) 139 (33)
Generalized 187 (45) Parental depression 252
Unclassified 70 (16) Not depressed 145 (58)
Seizure frequency (during last month) Borderline 66 (26)
None 191 (46) Depressed 41 (16)
15 127 (31) Parental anxiety 252
630 40 (10) Not anxious 105 (42)
>30 54 (13) Borderline 46 (18)
Duration (years)* 4.2  3.6 Anxious 101 (40)
<1 71 (17) Paternal health 418
13 110 (26) Good 347 (83)
36 135 (33) Middle 42 (10)
>6 100 (24) Poor 29 (7)
Seizure duration (min) Maternal health 418
<1 169 (41) Good 344 (82)
110 178 (43) Middle 56 (14)
1030 35 (8) Poor 18 (4)
>30 32 (8) Social bias toward the child 418
Number of AEDs Yes 101 (24)
1 192 (53) No 310 (74)
2 98 (27) Not available 7(2)
3 70 (20) Knowledge about epilepsy of the parents 418
Familiar 48 (12)
AED, antiepileptic drug. Average 222 (53)
*Mean  SD. Limited 148 (35)

diagnosis was 4.8 and 5.5 years, respectively. The
average duration was 4.2 years. Of all the patients,
partial seizure was observed in 161(39%) and
generalized seizure in 187 (45%). Of them, 191
(46%) had no seizure in the last month; 54 (13%)
had more than 30 seizures in the last month. For
the same period, 71 (17%) of the children were
<1 year old; 100 (24%) were more than 6 years
old. Seizure duration in 169 (41%) children was
usually <1 min; in 32 (8%) children it was usually
more than 30 min. As regards AED treatment, 192
(53%) of the children were in mono-therapy
treatment.
Sociodemographic characteristics of the children
are listed in Table 3. Of all the 418 respondents, 97
(23%) had a familial personal monthly income less
than 600 RMB; 101 (24%) responded yes to the
question of social bias toward the children; 310
(74%) responded no. Of the parents only 12%
knew much about epilepsy, 35% of them knew
little about epilepsy. Of the 252 respondents, 41
(16%) were with depression, 66 (26%) were in
borderline; 101 (40%) were with anxiety, 46 (18%)
were in borderline.
Factors aecting QoLCE overall score are listed
in Table 4. The signicant (P < 0.05) aecting
factors included childrens current educational
degree, mental development, age at onset and
diagnosis, seizure frequency, duration, number of
AEDs, parental anxiety, depression and parental
health. Factors with the signicance level below
0.15 were excluded. They were age, sex, parental
knowledge about epilepsy, familial economic state,
seizure duration and seizure type.
To further explore the relative contributions of
these variables in determining the QoLCE of our
population, we performed a multiple regression
analysis, the results of which are listed in Table 5.
In the regression model, we included factors
signicantly correlated with QoL in Table 4. To
explain the model more comprehensively, we also
included age, sex, parental age and career, parental
knowledge about epilepsy, familial economic state,
seizure type, seizure duration, as these factors
might inuence the results.
After exclusion of variables below the 0.15
signicance level, 48% of the overall variation of
QoLCE scores was explained by this model. The
signicant predictors of QoLCE overall score
included: anxiety (24%), number of AED (12%),
familial economic state (6%), paternal career (4%)
and seizure frequency (2%).
The explanatory factors for each subscale are
also listed in Table 5. Important (explaining >5%)
items included: maternal health for physical activ-
ities; familial economic state for well-being; seizure

169
Yong et al.

Table 4 Factors affecting quality of life in patients with epilepsy Table 4 Continued

Characteristics QoLCE overall score (SD) Characteristics QoLCE overall score (SD)

Age 0.021 Parental knowledge about epilepsy 0.038

Sex )0.016 Familiar 63.1 (15.9)
Male 63.4 (15.8) Average 62.4 (17.0)
Female 62.8 (17.4) Limited 64.2 (16.0)
Current educational degree 0.393***
None and dropout 46.3 (19.1) QoLCE, quality of life in children with epilepsy; SD, standard deviation; AED,
Kindergarten 65.7 (15.0) antiepileptic drug.
Primary school 66.3 (13.4) ***P < 0.001 **P < 0.01 *P < 0.05.

Junior school or higher 69.2 (11.3) Pearson's correlation coefficient.
Mental development (140 has record) 0.140*
Normal 65.3 (17.0)
Poor 59.5 (18.9) Table 5 Forward stepwise regression model explaining QoL in children with
Age at diagnosis 0.271*** epilepsy
Age at onset 0.258***
Seizure type )0.055
Items Factors R2 (%) P-value
Partial 64.4 (15.2)
Generalized 62.4 (15.7)
QoLCE score Parental anxiety 24 0.00
Unclassified 62.1 (21.0)
Number of AEDs 12 0.00
Seizure frequency (during last month) )0.233***
Familial economic 6 0.00
None 67.0 (15.7)
Paternal career 4 0.04
15 64.4 (14.2)
Seizure frequency 2 0.12
630 55.8 (18.4)
Physical activities Maternal health 7 0.02
>30 52.3 (16.3)
Well-being Familial economic 5 0.06
Duration (years) )0.212***
Maternal educational degree 5 0.07
<1 67.9 (15. 6)
Seizure type 4 0.09
13 65.8 (16.8)
Duration 3 0.10
36 61.9 (17.1)
Cognition Parental depression 5 0.08
>6 58.6 (14.8)
Onset 4 0.11
Number of AEDs )0.427***
Seizure duration 4 0.09
1 67.7 (14.7)
Social activities Seizure type 7 0.03
2 57.8 (15.6)
Paternal educational degree 6 0.04
3 51.0 (16.6)
Duration 5 0.05
Seizure duration (min) )0.090
Maternal age 4 0.09
<1 63.5 (15.6)
Seizure frequency 3 0.12
110 64.4 (15.6)
Behavior Mental development 7 0.03
1030 64.9 (16.2)
Maternal age 5 0.06
>30 53.7 (21.7)
Parental depression 5 0.04
Familial personal monthly income 0.043
Duration 3 0.13
Low (<600) 61.7 (17.5)
General health Parental anxiety 18 0.00
Middle (6002000) 63.4 (16.2)
Parental knowledge about epilepsy 11 0.00
High (>2000) 63.7 (16.2)
Seizure frequency 4 0.05
Parental depression )0.407***
General QoL Parental anxiety 21 0.00
Not depressed 67.6 (13.4)
Parental knowledge about epilepsy 7 0.01
Borderline 59.0 (16.5)
Paternal health 7 0.01
Depressed 54.2 (17.5)
Seizure frequency 4 0.03
Parental anxiety )0.323***
Maternal health 4 0.05
Not anxious 69.3 (13.6)
Borderline 61.3 (13.2) QoL, quality of life; QoLCE, quality of life in children with epilepsy; AED, antiepi-
Anxious 57.7 (17.0) leptic drug.
Paternal health 0.131***
Good 64.2 (16.4)
Normal 59.0 (12.8)
Poor 57.0 (20.0)
knowledge about epilepsy and paternal health for
Maternal health 0.167*** general QoL.
Good 64.6 (16.4)
Normal 56.2 (14.8)
Poor 55.9 (15.9) Discussion
In China, as in most other developing countries,
knowledge of epilepsy among the public is rather
type and paternal educational degree for social poor (21). In addition to the limitation that the
activities; mental development for behavior; par- disease itself has already placed on them, children
ental anxiety and parental knowledge about epi- with epilepsy in China still nd themselves con-
lepsy for general health; parental anxiety, parental fronted with social barriers that prevent them from

170

being academically successful. Many children feel
stigmatized by epilepsy in their daily life, such as
paying attention in class, taking part in activities,
making friends, etc. Children are easily affected by
their parents. Parental attitude and knowledge
about epilepsy is rather unsatisfactory. Most of
the parents do not treat their children as normal
children and lose condence in their childrens
future. Some parents even think of epilepsy as a
kind of psychosis and a kind of disease beyond
redemption. Many parents do not tell the children
that they had epilepsy. They even would not like
doctors and others to mention the word epilepsy in
the presence of their children for fear the children
would know their disease. They would not violate
childrens will because they worry that childrens
anger or unhappiness would induce seizures. These
beliefs would result in overprotection and limita-
tions to the childs activities. But most experts
thought that over-protection was disadvantageous
to childrens future and disease itself (22, 23).
Consistent with other reports (58), the factors
that affected QoL included current educational
degree of the children, mental development, age at
onset and diagnosis, seizure frequency, and number
of AEDs. Children with epilepsy had a high
prevalence of behavioral and learning problems.
Many children with epilepsy could not perform as
well as the others. The data also indicate that onset
for debut of epilepsy has a negative impact on QoL
of children and parental emotion (2).
Part of our results was not consistent with other
reports. In our study, though there was dierence
in the QoL between partial and generalized
seizures, the dierence was not signicant. And
the correlation between seizure duration and QoL
was not signicant either. These diered from
other reports (1, 22, 24, 25). Although we do not
have a clear explanation for this phenomenon, it
may reect the unfavorable socio-cultural attitude
toward children with epilepsy in China. Here the
climate comes mainly from the parents. Parents
easily associated childrens abnormity with epi-
lepsy. They also perceive higher risk for their
children and worse performance than children
themselves. Moreover, from the negative mood of
parents, children know that they are with a kind of
shameful disease (12). Perhaps all these would
impact on the QoL of the children. However, the
difference may also result from selection bias.
The parental factors included parental anxiety,
depression and health of parents. QoL of parents
who had unhealthy children decreased widely,
whereas anxiety, depression and other negative
emotions increased (26). Some authors even
concluded that the inuence of parental emotion
Quality of life in childhood epilepsy
was larger than the epilepsy itself (27). Parental
anxiety and depression can affect the QoL of the
children. We speculated that the attitude of parents
toward children depended on their psychological
conditions, which would aggravate the childrens
strain and fear of seizure, and would affect the
childrens future behavior and personality (26).
Highly anxious parents may be more likely to
perceive higher risks for their children and misin-
terpret information about their childrens condi-
tion. Previous ndings suggest that parental
anxiety may have an impact on parenting behav-
iors (12). In contrast, the QoL of children may also
affect parental anxiety and depression. Therefore,
parental depression and anxiety is possibly a
cofactor for QoLCE scores. We found that paren-
tal anxiety/depression was more common among
parents whose children had more seizures, and the
difference was signicant (P < 0.05). But parental
anxiety/depression did not correlate signicantly
with childrens mental development. The health of
parents also correlated signicantly with QoL of
children. The poor health of parents was probably
related to their anxiety and depression, both of
which aected their perceptions of QoL for their
children. The parental factors of anxiety and
depression likely result in their reports of poor
health. Though we did not nd a signicant
correlation between parental knowledge about
epilepsy and childrens QoL, we think that there
is an urgent need to let the parents know about
epilepsy. Because factors affecting the childrens
QoL were multifaceted, many factors were inter-
actional. Parental knowledge about epilepsy would
affect their attitude and educational style toward
children, accordingly, the QoL of children.
On multiple regression analysis, we found that
parental anxiety was a very important factor
aecting the overall QoL and subscales. The
result conrmed that parental mood affected the
QoL of children (12). Unlike studies of adults,
parental depression was not included in the model.
In adults, depression and anxiety were independ-
ently associated with reduced QoL. But the reason
of the difference was not known (8, 13, 23, 28). In
our study parental depression always coexisted
with parental anxiety, while the prevalence of
parental anxiety was much more than parental
depression. So perhaps the effect of parental
depression was substituted by parental anxiety.
Moreover, clinical characteristics such as seizure
duration, seizure type, seizure frequency, etc. were
also factors affecting the overall QoL and sub-
scales. Other familial factors such as parental
health, maternal educational degree, and paternal
career also entered into the models.
171
Yong et al.
Our study revealed that factors such as chil-
drens educational degree, mental development,
age at diagnosis and onset, seizure frequency,
duration, number of AEDs, parental anxiety/
depression, parental health correlated signicantly
with childrens QoL. The signicant predictors of
overall QoLCE score included: anxiety, number of
AEDs, familial economic state, paternal career and
seizure frequency. Psychosocial functioning of the
parents was important in several models in aect-
ing the QoL, more so than physical factors. Thus,
to improve the quality of life of children with
epilepsy in China, besides the proper management
of epilepsy, a general public education campaign
for epilepsy and the need to address and correct the
existing biases are necessary, and the psychological
intervention (e.g. education and consultation) to
the children and parents was also essential (21).
The limitations of this study include: (i) The
questionnaire was parental in nature, and the
reports made by parents may not reect the views
of the children; (ii) People who visited the hospital
were in a relatively better economic state; (iii)
Parents who were reluctant to participate in our
study were excluded. (iv) The HAD response rate
was only 60%, and only 30% of parents answered
questions regarding their childrens mental devel-
opment. Therefore, selective bias might exist. (v)
Only one of the parents took part in the survey. We
did not make comparisons between the reports of
both parents. This might also have introduced
selective bias.
Despite all the limitations, our study still
demonstrates some new suggestions. First, par-
ental anxiety and depression were highly preval-
ent in the general population. Second, in addition
to the demographic and clinical characteristics of
the children, many parental and familial factors
also correlated signicantly with QoL. This
suggests that, to improve QoL of the children
with epilepsy with the exception of AED,
surgery and some intervention intended for chil-
dren there is much to be done to the family
and parents. Recognition of this will be helpful
for professionals in treating and improving the
QoL of children with epilepsy.
Acknowledgement
This study was supported by a research fund from 973
national pivotal basic research program (2001CB510310).
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