580405

research-article2015

CPJXXX10.1177/0009922815580405Clinical PediatricsLiu and Han

Article

Risk Factors on Health-Related

Quality of Life in Children With Epilepsy

Clinical Pediatrics
2015, Vol. 54(14) 13341338
The Author(s) 2015
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DOI: 10.1177/0009922815580405
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Xinjie Liu, PhD1 and Qizheng Han, MD2

Abstract
The goal of this study was to evaluate how epilepsy affected the health-related quality of life (HRQOL) in children
with epilepsy, as well as the risk factors for poor HRQOL. Parents of epileptic children (n = 223) and parents of
healthy children (n = 216) were enrolled. The Child Epilepsy QuestionnaireParental form was given to all parents.
Children with epilepsy had significantly lower HRQOL scores for overall QOL and all subscales. Seizure types
were not associated with HRQOL, but the age of the child with epilepsy, disease courses and seizure frequency did
influence the quality of life. Epilepsy has a severe impact on childrens HRQOL, and age, increased seizure frequency
and longer duration of epilepsy are associated with poor HRQOL.
Keywords
epilepsy, child, quality of life

Introduction
Epilepsy is relatively common among children, with a
reported rate of 3.4 to 3.9 per 1000 children in developed
countries1 and a significantly higher rate for children in
developing countries.2 The consequences of epilepsy are
not limited to physical injuries but can also include a serious impairment of a childs psychosocial development.3
The unpredictability of a seizures onset often brings a
variety of potentially embarrassing and dangerous situations depending on the circumstances. Beyond seizures,
children with epilepsy face numerous challenges, including being treated as less intelligent and less social than
healthy children, and epileptic children tend to experience limited school, professional career, and marriage
prospects.4 Up to 30% of children with epilepsy have
depressive disorders, and an estimated 16% have anxiety
disorders.5,6 Likewise, approximately half of all children
with epilepsy have school-related difficulties: learning
disabilities, aggression, and attention-deficit/hyperactivity disorder.7 All the consequences mentioned above can
have a significant adverse impact on quality of life for
children with epilepsy.
Health-related quality of life is defined as the subjective perception of the impact of health status, including disease and treatment, on physical, psychological, and social
functioning and well-being.8 Perception may depend not
only on a diseases severity but also on an individuals age,
gender, social class, ethnicity, education, anxiety level, and
ability to exaggerate or minimize symptoms. Although

most empirical assessments have been made to compare

the quality of life of children with different conditions,
only a few conclusions can be drawn based on such
studies.9 Moreover, the existing studies have focused
solely on selected subgroups such as adolescents,10-12 children with intractable/refractory epilepsy,13,14 or children
who have undergone epilepsy surgery.15,16
The present prospective study was therefore designed to
compare the levels of proxy-reported quality of life of children with epilepsy to those of healthy peers. This study also
investigated whether there is a relationship between clinical factors such as age, disease course, seizure frequency or
type of seizures and health-related quality of life.

Method
Participants
A total of 223 children with epilepsy from the pediatric
epilepsy outpatient department were included. All were
1

Qilu Hospital, Shandong University, Jinan, Peoples Republic of

China
2
Provincial Hospital Affiliated to Shandong University, Jinan, Peoples
Republic of China
Corresponding Author:
Xinjie Liu, PhD, Department of Pediatrics, Qilu Hospital, Shandong
University, No. 107 Wen Hua Xi Road, Jinan 250012, Peoples
Republic of China.
Email: liuxinjie@sdu.edu.cn

1335

Liu and Han

diagnosed according to International League Against
Epilepsy (ILAE) criteria, and the proposal from ILAE
(1989) was used to classify seizure type. The children
were between 4 and 18 years of age, and all had parents
who were capable of completing the questionnaire.
A total of 216 healthy children matched for age, sex,
degree of education, and socioeconomic status were collected as control group. There was no significant difference in degree of education and socioeconomic status
between children with epilepsy and control group.
The study was approved by the institutional ethics
committee of Shandong University and the parents of
each participant.

parent-respondent demographic and clinical characteristics of the healthy children and the children with epilepsy are summarized in Tables 1 and 2.

Design, Equipment, and Procedure

Comparison of Health-Related Quality of

Life Impairment in Children With Different
Seizure Types

The Child Epilepsy QuestionnaireParental form by Sabaz

etal17 was chosen to measure epilepsy-specific healthrelated quality of life. The Child Epilepsy Questionnaire
Parental form has been shown to be a valid and reliable
epilepsy-specific questionnaire to measure the healthrelated quality of life of children at the age of 4 to 18
years. We used a Chinese version previously tested psychometrically18,19 for which acceptable reliability and
validity have been established in China (Cronbachs was
.97, and the values for the 16 subscales ranged from .70
to .96). The Child Epilepsy QuestionnaireParental form
consists of 76 items that are organized into 16 subscales
that contain 1 to 14 items each and cover the following 7
domains of life function: physical activities, social activities,
cognition, well-being, behavior, general health, and quality
of life. Raw scores are transformed to a 0 to 100 scale. Higher
scores indicate better health-related quality of life.20,21

Statistical Analyses
SPSS 13.0 was used for all statistical analyses. All
results are presented as mean standard deviation.
Scores between epilepsy group and controls were analyzed by Mann-Whitney rank sum test. Nonparametric
Kruskal-Wallis test followed by the Bonferronicorrected Mann-Whitney U tests were performed to
compare multiple groups for health-related quality of
life. A Spearman correlation test was performed to determine whether there was any correlation between the age
of the child with epilepsy, disease course, or seizure frequency and health-related quality of life. A value of P <
.05 was considered statistically significant.

Results
Intake Data
A total of 223 children with epilepsy (145 boys, 78
girls), aged 4 to 15 years participated in this study. The

Comparison of Scores for Health-Related

Quality of Life Between Epilepsy Group and
Controls
Scores for the health-related quality of life in controls
and epilepsy children are listed in Table 3. Significant
differences were observed between controls and the
children with epilepsy for all 16 items and overall quality of life.

The influence of seizure types on health-related quality

of life was investigated. Parents of children with epilepsy were allocated to a simple partial group, complex
partial group, absence group, tonic/clonic group, and
tonic-clonic group according to the seizure types of their
children. We found that there was no significant difference in scale scores among the 5 groups (P > .05).

The Relation of Health-Related Quality of

Life Scores With Age, Disease Course, and
Seizure Frequency in Children With Epilepsy
To determine the correlation between the clinical factors
such as age of patient, disease course, seizure frequency,
and health-related quality of life, we calculated the
Spearman rank correlation within the epilepsy patient
group. There was a statistically significant negative correlation between the health-related quality of life scores
and the clinical factors of age (r = 0.305, P < .01), disease course (r = 0.234, P < .01), and seizure frequency
(r = 0.206, P < .01). Older age of patient, more frequent seizures, and longer duration of illness were all
associated with lower, and therefore worse, quality of
health-related quality of life scores in the present study.

Discussion
In this study, childrens health-related quality of life was
rated by parental report. As expected, we found that parents reported lower health-related quality of life for children with epilepsy than for healthy children, which is
consistent with previous results concerning healthrelated quality of life in children with epilepsy.9,22-24 In
the present study, scores on individual subscales of the
health-related quality of life in children with epilepsy
were also significantly lower. The sequence of scores

1336

Clinical Pediatrics 54(14)

Table 1. Demographics for Parents of Healthy Children

and Children With Epilepsy.

Parents gender, n (%)

Male
Female
Age, years, mean SD
Parental marriage, n (%)
Married
Divorced
Level of education, n (%)
Elementary
High school
University
Employment, n (%)
Full-time
Part-time
Unemployed
Environment, n (%)
Urban
Rural

Epilepsy
(n = 223)

Healthy
(n = 216)

90 (40.4)
133 (59.6)
32 8.6

88 (40.7)
128 (59.3)
32 8.1

200 (89.7)
23 (10.3)

195 (90.3)
21 (9.7)

5 (2.2)
132 (59.2)
86 (38.6)

5 (2.3)
130 (60.2)
81 (37.5)

98 (43.9)
103 (46.2)
22 (9.9)

96 (44.4)
101 (46.8)
19 (8.8)

93 (41.7)
130 (58.3)

90 (41.7)
126 (58.3)

Table 2. General Clinical Data for 223 Children With

Epilepsy.
Characteristics
Sex
Male
Female
Age (4-15 years)
6
7-10
>10
Age of onset of illness, years, mean SD
Duration of illness, years, mean SD
Seizure frequency (times a month)
0
1-10
>10
Seizure types
Simple partial
Complex partial
Absence
Tonic/clonic
Tonic-clonic

n (%)
125 (56.1)
98 (43.9)
85 (38.1)
72 (32.3)
66 (29.6)
5.5 4.8
2.8 2.2
145 (65)
40 (18)
38 (17)
30 (13.5)
56 (25.1)
56 (25.1)
62 (27.8)
19 (8.5)

from low to high is as follows: social function, cognitive

function, general health, behavioral function, physical
function, and emotional well-being. In the social function domain, children with epilepsy reported problems
with limited social activities, isolation from others, and

difficulty in making friends. Epilepsy is not only a medical diagnosis but also a social label. Children with epilepsy are treated as less social and less intelligent than
normal children, and they tend to have limited school,
professional career, and marriage prospects.2 Children
with epilepsy have more cognitive problems than normal children, such as trouble concentration, poor memory, and language disorders. Lower general health scores
indicated that lower health-related quality of life and
physical health are correlated. Causes of the lower physical function scores may be both role of epilepsy itself
and parents overprotection of their children. In our
study, the main behavioral deficits in children with epilepsy were that they were easily angered, attacked people, acted without thinking, and were independent. Our
study showed that health-related quality of life of the
children with epilepsy was also lower in the areas of
emotional well-being compared with healthy children.
Epilepsy in children can often be associated with anxiety, depression, and low self-esteem.
Additionally, we searched for the existence of a differential effect on health-related quality of life for age,
disease course, frequency of seizures, and seizure types.
Among the aforementioned factors, seizure types were
not associated with health-related quality of life, while
the age of the child with epilepsy, disease course, and
seizure frequency did influence the quality of life.
In the present study, health-related quality of life correlated negatively with the childrens age. This result
means that older children with epilepsy appear to be
more affected by the disorder than do their younger
counterparts (eg, feeling that epilepsy limits social activities, causes isolation, and is bad and unfair).10 Children
go through profound developmental changes in biological, social, and psychological domains as they get older.25
Normal challenges can be described as identity formation, self-definition, and achievement of independence.9,26 Mastering these challenges could be especially
difficult when additionally coping with epilepsy, which
could result in poorer adaptation to epilepsy later in life.9
Because of the results of the present study, it might be
suggested that age is associated with poorer healthrelated quality of life in children with epilepsy.
It is not surprising that the longer duration of the illness was associated with lower scores in health-related
quality of life in children with epilepsy. As the disease
course increases, illness-related stressors such as the
need for frequent medical visits, the demands of a multicomponent treatment regimen and an unpredictable
illness course continue. Children with an increased disease course in epilepsy might display more feelings of
nervousness, sadness, depression, anger, and fear. In
another study, it was shown that as the duration of

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Liu and Han

Table 3. Scores of the Health-Related Quality of Life Subscale for Parents of Children With and Without Epilepsy.
Scale

Epilepsy Group
(n = 223)

Control Group
(n = 216)

t Value

Physical restrictions
Energy/fatigue
Attention/concentration
Memory
Language
Other cognitive abilities
Depression
Anxiety
Control/helplessness
Self-esteem
Social interactions
Social activities
Stigma
Behavior
General health
Quality of life
Overall quality of life

55.43 17.85
60.86 16.28
45.56 25.92
52.65 26.78
47.54 26.92
45.28 25.34
65.31 19.36
62.28 18.32
61.52 16.92
65.56 16.34
55.28 22.36
37.21 27.25
53.55 20.37
55.75 20.26
50.43 27.24
55.28 25.65
53.66 17.65

75.35 16.92
72.64 15.35
65.38 10.55
65.87 19.83
65.28 20.32
64.76 15.64
82.32 17.86
78.64 23.67
73.45 13.84
79.39 12.82
65.28 12.48
68.69 17.16
76.45 14.29
65.77 15.62
70.48 20.95
72.29 23.56
72.33 14.47

11.973*
7.883*
15.719*
5.891*
7.809*
9.726*
9.573*
8.807*
8.098*
9.883*
5.809*
14.531*
13.671*
5.814*
8.661*
7.240*
12.137*

*P < .01.

illness increases in epilepsy, the family functioning

scores decreased.27
Seizure frequency was a risk factor for poorer healthrelated quality of life in the present study. Effects of
some disease parameters such as seizure control or seizure frequency on health-related quality of life have
often been discussed. Many studies have shown a substantial impact of seizure control/seizure severity on
health-related quality of life, especially when groups
without seizure control were compared with groups with
seizure control.9,28-30
As mentioned at the beginning of the article, epilepsy
is associated with a high incidence of comorbidities
such as mood disturbance, cognitive problems, and
learning problems. A limited number of studies have
revealed a negative association of comorbidity with
health-related quality of life in children with epilepsy.22
However, because we did not hand out a scale evaluating the childrens comorbidities, we were not able to
relate them to the scores of health-related quality of life.
This may be considered as a limitation of the study.

Conclusion
The present study demonstrated that children with epilepsy had lower health-related quality of life than normal children. Poorer health-related quality of life on the
Child Epilepsy QuestionnaireParental form was predicted by older age, longer duration of epilepsy, and
higher frequency of seizures. These 3 clinical factors
suggest that specific features can identify children at

high risk for poor health-related quality of life. This

study demonstrates that children with epilepsy, especially children who are older, have a longer duration of
epilepsy, and have more frequent seizures, often exhibit
health-related quality of life problems that require intervention as early as possible.
Author Contributions
XL conceived and designed the experiments and performed the
experiments. QH analyzed the data and XL wrote the paper.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this
article: This research was supported by the Science and
Technology Project Plan of the Department of Science &
Technology of Shandong Province (2010GSF10262), by the
Independent Innovation Project (201004057) of the Jinan City
Science and Technology Bureau, by the National Natural
Science Foundation of China (81371337), and by the Special
Foundation for Taishan Scholars.

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