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.

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.

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)

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

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.

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.

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