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Indian Pediatr 2011;48: 893-896 |
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Quality of Life in Children with Epilepsy |
Anju Aggarwal, Varsha Datta and *LC Thakur
From the Departments of Pediatrics and *Neurology,
University College of Medical Sciences, Delhi, India.
Correspondence to: Dr Anju Aggarwal, Flat No 3C, Block
C2B, Janakpuri, New Delhi 110 058, India.
Email: [email protected]
Received: October 23, 2010;
Initial review: November 13, 2010;
Accepted: February 02, 2011.
Published online: 2011 May 30.
PII:S09747559INPE1000367-2
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Abstract
Quality of life was assessed in 108 epileptic
children (6-15 years) using a hindi translation of Quality of Life in
Children with Epilepsy (QOLCE) questionnaire. The questionnaire consist
of 76 items with 16 subscales covering five domains of life: physical
function, social function, cognition, emotional and behavioral well
being. Overall score was 62.62±21.32. Chronbach’s-a
for all 13 multi-item subscales was above 0.70, indicating good internal
consistency and reliability. Pearson correlation revealed good construct
validity. Overall quality of life was affected by age, type of epilepsy,
seizure frequency and maternal education (P<0.05). Energy levels,
language and attention (P<0.05) were better in older children
whereas younger children had better self esteem and lower levels of
anxiety. Seizure frequency compromised all fields except stigma,
attention, and energy levels (P>0.05).
Key words: Children, Epilepsy, Hindi, India, Quality of
Life.
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T he management of epilepsy
requires
recognition of potential effects of epilepsy
on all aspects of life. It is increasingly
being recognized that health-related quality of life measurement adds new
and important information to other traditional health outcome measures
such as seizure control and cognitive improvement [1,2].
The generic scales used to measure the Quality of Life
(QOL) like Child Health Questionnaire are insufficiently sensitive to
epilepsy [3]. There is lack of research on QOL among children with
epilepsy from the developing countries, with only a few studies from India
[4]. We planned the present study to assess the QOL using a Hindi
translation of Quality of Life in Children with Epilepsy (QOLCE)
questionnaire.
Methods
A total of 108 children with epilepsy, between the ages
of 6-15 years were recruited from the Departments of Pediatrics and
Neurology of University College of Medical Sciences and Guru Tegh Bahadur
Hospital, New Delhi. After ethical approval and an informed consent,
parents of epileptic children receiving antiepileptics for at least a
period of 6 months were interviewed by the investigator. Demographic
profile was assessed, which included family type, parents, education
status, income, and place of residence. Age, sex, development of child,
type of seizure, and therapy was recorded. Diagnosis of the type of
epilepsy was made by history, EEG and neuroimaging. Children with mental
retardation and those with intractable epilepsy were excluded from the
study. Though a formal IQ assessment was not done, we included children
studying in age appropriate class in school and those with development
comparable to normal siblings.
The QOLCE was translated in Hindi. It was re-translated
to English and found to be similar. The QOLCE was filled and coded by a
single investigator, as per the standard instructions available with the
questionnaire. QOLCE consists of 16 quality of life subscales (14
multi-item and 2 single item). Each subscales has number of items or
questions with responses as excellent, very good, good, fair, and poor.
They are changed to 1,2,3,4,5 as per instructions. Then changed on a scale
of 100 i.e. 1=0, 2=25, 3=50 and the scores compared. Items corresponding
to each subscale are marked and there mean score is score of that
subscale.
The data was analyzed using the Statistical Package for
the Social Sciences (SPSS) Version 10. An overall QOL score was computed
by adding each subscale score for each individual and then dividing by 16.
Cronbach’s a
was used to determine the internal consistency and reliability of the
subscales. Pearson correlation was determined for the various subscales to
determine the construct validity of the questionnaire. The mean QOLCE
scores were compared in children with different seizure types, frequency
and family demographic variables using the intragroup Tukey test.
Results
A total of 108 children between the ages of 6 to 15
years were evaluated using the QOLCE. Of the 108 subjects, 87 (33 CT, 54
MRI) had neuroimaging results available (35 neurocysticercosis, 8 tuberculomas,
35 normal). Table I shows the demographic data and overall
QOL in the various variables. The overall quality of life varied
significantly between different age groups, type of epilepsy, time since
last seizure and mother’s education.
TABLE I Demographic Profile And Relation With Overall Quality of Life (N=108)
Variable |
Overall QOL |
P value* |
|
Mean (SD) |
|
Age |
|
|
6-9 y (n=42) |
59.3 (17.09) |
0.022 |
9-12 y (n=42) |
54.4 (13.76) |
|
12-15 y (n=24) |
60.2 (12.02) |
|
Type of epilepsy |
|
|
Partial (n=86) |
52.5 (14.10) |
0.049 |
Generalized (n=18) |
59.8 (14.10) |
|
Time since last seizure |
|
|
£1 wk (n=22) |
44.5 (11.44) |
0.001 |
1wk - £1 mo (n=10) |
51.8 (9.22) |
|
1mo -£6 mo (n=22) |
56.8 (17.30) |
|
6 mo -£1 yr (n=24) |
63.9 (13.35) |
|
>1 year (n=30) |
64.5 (10.76) |
|
Mother’s education |
|
|
Illiterate (n=76) |
59.8 (15.4) |
0.044 |
Primary school (n=23) |
51.2 (11.60) |
|
High school (n=9) |
55.0 (13.8) |
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*P value is significant at the 0.05 level (intragroup comparison by Tukey test). |
The overall QOL and that for the various subscales is
shown in Table II. The mean overall QOL score was
62.6±21.32. Cognition was found to be affected most severely with the
lowest mean score of 48.4±22.74. Most of the children did not respond to
the question related to swimming (Question 3e); hence, the score for
physical restriction subscale was calculated excluding this question.
TABLE II Overall QOL Score and Cronbach’s a of the Subscales
Subscales |
QOL scores |
Cronbach’s a |
|
mean (SD) |
|
Physical restrictions |
59.9 (21.11) |
0.799 |
Energy/fatigue |
53.8 (32.22) |
0.955 |
Attention/concentration |
58.4 (18.74) |
0.793 |
Memory |
59.0 (18.61) |
0.873 |
Language |
70.3 (16.62) |
0.868 |
Cognition |
48.4 (22.74) |
0.707 |
Depression |
70.4 (25.40) |
0.923 |
Anxiety |
65.6 (19.51) |
0.809 |
Control/helplessness |
62.8 (24.95) |
0.819 |
Self esteem |
66.2 (17.88) |
0.764 |
Social interactions |
72.1 (22.99) |
0.840 |
Social activities |
75.8 (20.28) |
0.819 |
Stigma* |
63.8 (25.00) |
|
Behavior |
55.9 (12.24) |
0.772 |
General health* |
56.9 (30.73) |
|
QOL* |
62.7 (28.28) |
|
Overall QOL* |
62.6 (21.32) |
|
* Single item subscales; QOL: Quality of Life by Quality of Life in
Children with Epilepsy (QOLCE) questionnaire. |
A value >0.7 for Cronbach’s
a is considered
indicative of good internal consistency reliability. All the values
obtained for the 13 multi-item subscales were above 0.7, with the highest
value of 0.955 obtained for the energy/fatigue subscale. A correlation
matrix for the 16 QOLCE subscales was examined to establish its construct
validity. High correlations were defined as those falling at or above 0.68
(i.e., more than 45% shared variance). In our study, 102 out of the 128
variables were below 0.68, indicating weak correlation between individual
subscales establishing a good construct validity.
The subscales affected by the age were energy/fatigue,
attention/concentration, language, anxiety and self esteem. Partial
epilepsy was found to impact the levels of physical energy, social
interaction and social activity more severely than generalized epilepsy.
High seizure frequency or lesser time since last seizure was shown to
adversely affect physical activity, memory, language and other cognitive
faculties of the child. It was also found to significantly increase the
levels of anxiety, decrease self esteem and limit social interactions of
the patient. It was noted to significantly alter the behavior, general
health and the overall quality of life in such children.
Maternal education status was seen to affect at least 7
of the 16 subscales significantly, namely attention/concentration, memory,
cognition, depression, anxiety, self esteem, social interactions,
behavior, general health and quality of life. The overall quality of life
was also significantly affected by the level of maternal education.
Discussion
Standard measures to assess health related quality of
life in children with epilepsy are lacking in India. The questionnaire
used in our study consisted of 76 items, 13 of the 16 subscales were
multi-item scales, having more than 1 question. Cronbach’s
a was more than 0.07,
the generally accepted criterion of internal consistency reliability. The
internal consistency reliabilities calculated in this study and its
correlation with seizure severity were similar and of the same magnitude
and pattern as that of the QOLCE validated in America epilepsy patients
[6]. This is the first study to use an epilepsy specific instrument to
study the effect of the demographic variables on the quality of life of
children with epilepsy in India. As in our study, the authors found that
mother’s education was a major predictor of quality of life, accounting
for 39% variance in QOL scores. Nearly 40% of the children were found to
have significant psychopathologic maladjustment.
We found a weak correlation between individual
subscales. For a questionnaire to have good construct validity, the
correlation between subscales measuring different aspects of QOL should
not be high (e.g. physical restrictions, and cognition). The strength of
the present study is that it demonstrates high levels of internal
consistency, reliability and construct validity, as per criteria listed in
the ILAE subcommittee report [7].
We observed that lesser the time interval since last
seizure, more severe was the compromise in quality of life. Sabaz, et
al. [5] proved that the QOLCE is sensitive to differences in seizure
severity. This result is consistent with previous findings reports [8-10].
Age of the epileptic children was seen to affect the
overall QOL and five subscales significantly. The lower self-esteem in
older children may be because of the fact that older children may feel
ashamed of their condition, and worry about social isolation. Children
between 6-9 years of age scored better in the language domain. This is due
to easier adaptability and greater learning skills in the younger age
group. Devinsky, et al. [9] showed that older adolescents reported
a poorer overall HRQOL. This finding was not confirmed in our study where
older children scored higher in most subscales. QOL in 9-12 year olds is
worse than younger children because younger children may be able to carry
out more activities normally and not be hampered by epilepsy. Or they may
not feel any lack of ability if there is restriction of any activity as
much as 9-12 year olds. We feel 9-12 year olds have more adjustment
problems then younger children or those 12-15 years olds. 12-15 years ones
will have better understanding of the situation and disease, hence less
impact on quality of life.
Self esteem and social interaction scores of the
children with higher educated mothers were lower than the scores of the
children with illiterate mothers. This could be explained by the higher
expectations from their children by the educated mothers, which led them
to perceive the quality of life of their epileptic children more
negatively. In a previous Indian study, level of education and better
employment status showed a significant positive correlation with the
awareness of the public towards epilepsy [11].
Gender was not found to correlate significantly with
any subscale. Girls scored marginally better in the language, cognition,
social activities and behavior domains. Similarly, in the study by Gambhir,
et al. [11], negative attitude was significantly correlated with
lower level of education and occupation, but no significant difference was
noticed with regard to sex. Stevanovic, et al. [12] also reported
that mean HRQOL total scores were comparable between boys and girls.
Overall quality of life was significantly more
compromised in patients of partial epilepsy com-pared with generalised
epilepsy, signifying that partial epilepsy is less well accepted in our
community. Though this result may be skewed due to small number of
patients with generalised epilepsy compared to partial epilepsy.
The fact that we used a questionnaire in Hindi it will
have implications on use of same in our population. Using an epilepsy
specific questionnaire we found that, overall quality of life was
compromised in epileptic children. Measures to improve the quality of life
of epileptic children should be a part of the treatment protocol of
epilepsy in children.
Contributors: AA, VD, LCT: planned the study; VD:
collected the data; AA, VD: analysed the data and drafted the manuscript:
AA, LCT: critically analyzed the manuscript. All authours approved the
final version. AA will act as guarantor.
Funding: None.
Competing interests: None stated.
What this Study Adds?
• Quality of life is affected by age, seizure
frequency, maternal education and type of epilepsy in Indian
children with epilepsy.
• Cognition, energy levels and concentration are most commonly
affected due to epilepsy.
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