Assessment of parent reported quality of life in children with epilepsy from Northern India: A cross-sectional study.

OBJECTIVE: The objective of the following study is to assess parent reported quality of life (QOL) in children with epilepsy and to assess the demographic and clinical factors, which influence the QOL in children with epilepsy. STUDY PARTICIPANTS: We consecutively enrolled 40 children aged from 2 years to 14 years with active epilepsy who had undergone a comprehensive evaluation for epilepsy.
MATERIALS AND METHODS: Parents were enquired on baseline demographic variables including age, gender, socio-economic status and parental education. Clinical details of epilepsy including the type of epilepsy, seizure frequency were assessed. QOL was evaluated with the parent reported quality of life in childhood epilepsy (QOLCE) questionnaire.
RESULTS: A total of 40 children were enrolled of which 55% (22/40) were males and the mean (standard deviation [SD]) age of enrolled children was 10.6 (2.7) years. The majority came from a rural background (80% [32/40]), were from lower (15 [37.5%]) or middle (23 [57.5%]) socio-economic status, with almost half (22 [55%]) of mothers being educated until high school. The overall mean (SD) QOL score was 66.7 (4.83). Lowest mean (SD) scores were observed in self-esteem (45.2 [7.3]) subscale and subscales with higher QOL scores included control/helplessness (82.1 [8.51]), anxiety (81.6 [12.55]) and social stigma (95.0 [11.6]). Parental education, socio-economic status (P = 0.96), frequency of seizure (P = 0.34) or type of epilepsy (P = 0.92) did not significantly affect the overall QOL among children with epilepsy.
CONCLUSION: Our study concluded that overall QOL was compromised in Indian children with epilepsy. Demographic factors like parental education, socio-economic status and clinical factors like frequency of seizure or type of seizure did not significantly affect the QOL of epileptic children.

Introduction

Epilepsy is one of the chronic illnesses in children, which is still considered a social taboo in Indian subcontinent. There are epileptic and non-epileptic factors which could adversely affect health related quality of life (QOL) among children with epilepsy. The factors which could adversely affect QOL include age at onset, type of seizure, duration of disease and number of antiepileptic drugs (AEDs). There is limited literature ascertaining the QOL among epileptic children from the Indian subcontinent.[12] Hence, we designed the present study with an aim to assess parent reported QOL in children with epilepsy and to assess the demographic and clinical factors which influence the QOL in children with epilepsy.

Materials and Methods

Study objectives

The primary objective of the current study was to assess self-reported QOL in children with epilepsy using a Hindi translation of QOL in children with epilepsy questionnaire. The secondary objectives were to assess the demographic factors and clinical factors which influence the QOL in children with epilepsy.

Study participants

We consecutively enrolled 40 children aged 2-14 years with epilepsy who had undergone a comprehensive evaluation for epilepsy. Epilepsy was defined as the presence of two or more unprovoked seizures at least 24 h apart in which children were receiving prophylactic AEDs for a minimum of 6 months duration. Comprehensive evaluation includes electroencephalography and neuroimaging. Children with co-morbid neurodevelopment conditions (mental retardation, developmental delay, cerebral palsy, autism, attention deficit hyperactivity disorder, behavioral disorder, neurodegenerative disorder and visual/hearing impairment), or chronic medical condition (asthma, hypertension, chronic renal failure, chronic lung disease, thalassemia, hypothyroidism, etc.) and children whose primary caregiver was not available to answer the questionnaire were excluded from the study. In addition, epileptic children who were considered for alternate therapies including dietary therapy or epilepsy surgery were also excluded from the study.

Study design and setting

The study was designed as a cross-sectional study and was conducted in the pediatric outpatient department of a tertiary care teaching hospital of north India. The center is a Government run center, which caters to heterogeneous population representing both urban and rural patients. Permission from the ethical committee was obtained and informed consent form was obtained from the parents prior to enrolment in the study.

Study methodology

Demographic and clinical factors

Parents of eligible children who consented to participate were assessed for demographic and clinical factors which could influence the QOL among enrolled children. The following demographic factors were recorded in performa: age, gender, parental education status, income and place of residence. Socio-economic status was finally determined as per revised Kuppuswamy classification.[3] Clinical factors were determined and recorded in terms of seizure type, seizure frequency over preceding 6 months, number of AEDs and duration of seizures. Patient's seizure type was classified broadly as generalized seizures, partial seizures and partial seizures with secondary generalization. Diagnosis of the syndrome classification of epilepsy was attempted based on seizure semiology, electroencephalographic and neuroimaging findings. Seizure frequency per month was determined by the mean monthly seizure frequency for at least 6 months prior to enrolment. Seizure frequency was determined as per the history recalled by parents or from the records if they were maintaining a seizure diary. The seizure frequency was categorized as less than one seizure per month, one to five seizures per month and more than five seizures per month. Duration of epilepsy was defined as chronological age minus age at diagnosis. Numbers of AEDs in the last 6 months were classified as 1 AED and more than 1 AED.

QOL assessment (quality of life in childhood epilepsy [QOLCE])

QOL was evaluated by the QOLCE questionnaire.[4] The instrument was translated by professional translators in Hindi and was piloted on 10 parents prior to initiation of the study. All precautions were exercised to retain the meaning, grammar and simplicity of the original version as the reliability and validity of QOLCE. Father and/or mother were given self-administered Hindi version of QOLCE questionnaire. Original QOLCE contains 91 items, which fell into five quality-of-life domains with 13 multi-item and three single item subscales: Physical function domain (12 items), cognitive function domain (23 items), emotional well-being domain (19 items), social-function domain (12 items) and behavioral function domain hub scale (23 items).

Statistical analysis

The data were entered into Microsoft Excel and statistical analysis was performed using the SPSS 15.0 version (SPSS, Inc., Chicago, IL, USA). Categorical variables like demographic and clinical factors were expressed as numbers and proportions; whereas, QOL scores was expressed as mean and standard deviation. The mean QOL scores were compared among the demographic and clinical variables using a Student's t-test and analysis of variance (ANOVA). All tests were two tailed and P < 0.05 was considered to be statistically significant.

Results

A total of 40 epileptic children aged 6-14 years were evaluated for QOL using QOLCE questionnaire. A total of 40 children were enrolled of which 22 (55%) were males and mean (SD) age of enrolled children was 10.6 (2.7) years. Most of the children came from a rural background (32 (80%]) and belonged to either low (15 (37.5%]), middle (23 (57.5%]) or higher (2 [5%]) socio-economic status. The majority of fathers (20 [50%]) and mothers (22 [55%]) were educated until high school. Table 1 shows the clinical (seizure related) profile of enrolled children.

Table 1

Clinical profile (seizure related) of enrolled children

The overall QOL score was 66.7 (4.83). Table 2 outlines the QOL scores in each subscale. Lowest scores were observed in self-esteem (45.2 [7.3]) subscale and subscales with higher QOL scores included control/helplessness (82.1 [8.51]), anxiety (81.6 {12.55}) and social stigma (95.0 [11.6]). Table 3 outlines the demographic and clinical factors affecting QOL. It was seen that parental education, socio-economic status (P = 0.96), frequency of seizure (P = 0.34) or type of epilepsy (P = 0.92) did not significantly affect the overall QOL among children with epilepsy.

Table 2

Overall QOL scores of the subscales

Table 3

Demographic and clinical factors affecting the QOL among children with epilepsy

On analysis of each subscale with baseline demographic and clinical factors, we observed that older children (12-14 years) had significantly compromised QOL in behavior subscale when compared with younger children (9-12 years) (P = 0.02). Children with generalized seizures scored better in physical activity/restriction (P = 0.028) but had compromised QOL scores in attention/concentration (P = 0.007). Children who belong to low socio-economic status had significantly better scores in social stigma when compared to those with middle and high socio-economic status (P = 0.04).

Discussion

Our study concluded that demographic factors such as parental education, socio-economic status and clinical factors like frequency of seizure or type of seizure did not significantly affect the QOL of epileptic children. We also found that the overall QOL in children with epilepsy was more affected in terms of low self-esteem, physical restrictions and decreased energy levels, whereas cognitive functions and social interactions and activities were less affected.

The poor access to health care, low socio-economic status and illiteracy continue to handicap management of the most chronic childhood illnesses in developing countries like India. It is not surprising to know that parental illiteracy and poverty compromise QOL among children with chronic illness like leukemia and cerebral palsy.[56] Even, epileptic children living in household of lower socio-economic status have been reported to have overall poor health related QOL.[7] Similar observations have also been reported earlier by authors from the Indian subcontinent.[12] The impact of economic burden on parents of epileptic child could probably force these kids into labor for their daily living which could be far more hazardous with such an epileptic predisposition. Surprisingly, we did not find any statistical significance of socio-economic status on QOL. This could probably be attributed to small sample size, skewed socio-economic status of our study population, predominantly hailing from rural backgrounds and easy access to health care and free supply of anti-epileptic drugs at our center.

The overall QOL score in the present study was 66.7 (4.83) which was comparable to QOL scores of 62.62 (21.32) in a similar study conducted in metropolitan city catering to urban population.[1] Epilepsy in children is known to be associated with anxiety, depression and low self-esteem.[8910] We observed a low QOL scores in assessment of self-esteem. Similar observations have been seen in a study conducted among 98 school going children, where it was observed that children of lower socio-economic status have lower self-esteem.[11] Although, the overall internal consistency of self-esteem subscale in QOLCE is close to 0.76 from the previous Indian study.[1] We believe that the answers to these questions among Indian children could be influenced by other factors such as gender, age and socio-economic status rather than epilepsy alone.

The QOL scores in a previous Indian study had compromised cognitive scores but performed better on emotional subscales.[1] Similarly, in another study conducted on 42 epileptic Indian children, 30% of parents perceived change in their child's behavior and decreased ability to concentrate on their studies.[2] In contrast, cognitive impairment was not perceived to impair the QOL. This could probably owe to difference in ethnicity, predominantly rural background of the enrolled children in the present study.

We also observed that 12-15 year olds had more compromised scores on behavioral subscales as compared to their younger (9-12 years) counterparts. Poor performance on behavioral subscales among teenagers is anticipated when they move to higher school from primary school. It is quite possible that older children may feel ashamed of their condition and thus may show more aggression and dissatisfaction in their behavior.[12] As noticed in the previous studies, gender did not affect the overall QOL or individual subscales significantly.[1] But girls experienced higher energy levels, better attention–concentration with low anxiety levels and low social stigma. In earlier studies,[12] it was proved that with increasing severity of epilepsy, the compromise in QOL was more severe. In contrast, our study population was predominantly well-controlled with only one child having poorly controlled seizures, hence not contributing to any correlation with severity of epilepsy in our study.

The present study provides an insight to the QOL among epileptic children from developing countries. Overall QOL was found to be compromised in epileptic children and was not affected by parental education or socio-economic status of the family. Hence, measures to improve their QOL should be stressed upon in addition to the regular drug treatment. Our study had a limitation of a small sample size and children having predominantly well-controlled epilepsy. Hence, studies with a larger sample size and equitable distribution of well, moderate and poorly controlled epilepsy are advised for future research.