European Journal of Cardiovascular Medicine

Epilepsy, a chronic neurological disorder characterized by recurrent, unprovoked seizures, represents a significant global health challenge, particularly in pediatric populations. As the second most prevalent neurological condition after migraine, epilepsy affects approximately 7.6 out of every 1,000 individuals worldwide, with a notably higher prevalence of up to 1 in 150 among children (Banerjee, 2009; Hesdorffer et al., 2011). This condition contributes to over 0.5% of the global disease burden and is frequently associated with psychiatric comorbidities, leading to an increased risk of premature mortality, especially in low- and middle-income countries (Pandolfo, 2011).

The World Health Organization (WHO) defines quality of life (QoL) as an individual's "perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards and concerns" (WHO, 1998). This multidimensional concept encompasses six domains: physical health, psychological health, level of independence, social relationships, environment, and spirituality/religion/personal beliefs. In the context of epilepsy, health-related quality of life (HRQOL) emerges as a crucial outcome measure in the treatment of children with epilepsy (CWE), providing essential insights into the comprehensive impact of the condition and its management (Forsgren, 1992; Sander & Shorvon, 1996).

While the long-term prognosis for seizure control in CWE is generally favorable, with 66% to 80% achieving seizure control (Goodridge & Shorvon, 1983; Annegers et al., 1979), the ramifications of epilepsy extend far beyond the occurrence of seizures. Up to 80% of CWE experience cognitive and/or mental health problems, significantly impacting their well-being and life outcomes (Hesdorffer et al., 2011). Moreover, the effects of epilepsy permeate beyond the affected child, influencing family dynamics and overall family well-being compared to families without epilepsy (Pandolfo, 2011).

Despite the availability of cost-effective anti-seizure medications capable of managing 70% of cases, a substantial treatment gap persists, particularly in developing countries like India. This gap is especially pronounced in rural areas, where up to 90% of cases may go untreated, compared to 22% in urban regions (Banerjee, 2009). Sociocultural factors, including stigma, discrimination, and misconceptions about the causes of epilepsy, primarily drive this disparity (Pandolfo, 2011).

The knowledge, attitudes, and practices (KAP) of parents and caregivers play a pivotal role in managing and adhering to treatment for childhood epilepsy. However, there is a paucity of research on these factors in developing countries, including India. This cross-sectional observational study aims to address this research gap by assessing the KAP of parents and caregivers regarding childhood epilepsy in northern India.

By evaluating these critical factors, this study seeks to enhance the utilization of primary care services and narrow the treatment gap between communities and healthcare facilities. The ultimate goal is to develop targeted interventions that improve the management and outcomes of epilepsy in pediatric populations, thereby enhancing the quality of life for both children with epilepsy and their families.

Study Design and Sample

This cross-sectional investigation was conducted at two tertiary care facilities - one in Rajasthan, North India and another in Karnataka, South India. The study population comprised children under 18 years of age with a history of epilepsy who had attended the pediatric or pediatric neurology outpatient departments at least once. Inclusion criteria encompassed parental/guardian informed consent, while exclusion criteria consisted of congenital disorders, history of head trauma, and non-residence in the study area.

The study duration spanned one year, from December 2022 to December 2023. Strict adherence to the inclusion and exclusion criteria was maintained. Only participants meeting these criteria and providing consent were thoroughly interviewed and examined. A sample size of 200 children with epilepsy who consented during the study period was utilized.

Statistical Analysis

Data analysis will employ appropriate statistical methods. Qualitative data will be presented as proportions and percentages, while quantitative data will be expressed as means and standard deviations. All statistical analyses will be performed using SPSS version 23, Apple Pages, and Numbers Version 13.2.

This investigation was conducted without external financial support, and all the authors declare no conflicts of interest.

The study included a total of 200 participants.

The gender breakdown is as follows:

Male participants: 106 (53%)

Female participants: 94 (47%)

This distribution shows a slightly higher representation of male participants in the study.

Age Distribution:

The participants were categorized into three age groups:

Below 5 years: 60 participants (30%)

6-10 years: 80 participants (40%)

Above 10 years: 60 participants (30%)

The 6-10 years age group had the highest representation, accounting for 40% of the total sample.

This study surveyed 200 participants on various aspects of epilepsy knowledge.

The results reveal several important insights:

 Misconceptions

1. Mental illness: 73.5% of respondents incorrectly believed epilepsy is a mental illness. This is a significant misconception that could contribute to stigma.
2. Supernatural causes: 39% thought epilepsy is caused by supernatural powers, indicating persistent superstitious beliefs.
3. Contagion: 21.5% incorrectly believed epilepsy is contagious, which could lead to unnecessary social isolation of people with epilepsy.

 Social and Educational Impact

1. Family life: 85% believed epilepsy hinders family life, suggesting a perception of significant social impact.
2. School performance: 71.5% thought epilepsy affects school performance, indicating awareness of potential educational challenges.
3. Societal discrimination: An overwhelming 91% recognized that society discriminates against people with epilepsy, showing awareness of stigma.

 Treatment and Management

1. Curability: 55.5% believed timely administration of medicines can cure epilepsy, showing some optimism about treatment.
2. Alternative medicine: 36.5% thought alternative medicine could cure epilepsy, indicating a significant minority open to non-conventional treatments.
3. Medication adherence: 61.5% admitted to trying to miss doses of anti-epileptic drugs, suggesting challenges with treatment compliance.
4. Doctor's instructions: 87% reported following doctor's instructions, indicating generally good compliance with medical advice.

 Positive Findings

1. Heredity: 89.5% correctly understood that epilepsy is not necessarily hereditary.
2. Doctor's explanations: Only 32% reported that their doctor explains about epilepsy every time, suggesting a need for improved patient education.

 Areas of Concern

1. Social integration: 63% would not allow their child to play with an epileptic child, indicating significant social barriers.
2. Work impact: 83% reported that their work is affected by having a child with epilepsy, highlighting the broader family impact.
3. Financial burden: 67% felt the financial burden of epilepsy, underscoring the economic challenges associated with the condition.

These findings highlight the need for continued public education about epilepsy to address misconceptions, reduce stigma, and improve the social integration of people with epilepsy. They also underscore the importance of supporting families affected by epilepsy and ensuring consistent medical education for patients.

Limitations of the study:

1. Limited sample size and geographical scope may affect generalizability
2. Cross-sectional design precludes assessment of changes over time
3. Self-reported data may be subject to biases
4. Questionnaire format may limit the depth of understanding
5. Potential for misinterpretation due to language translation
6. Limited consideration of educational and socioeconomic factors

This study reveals significant misconceptions and knowledge gaps among parents and caregivers regarding childhood epilepsy in North and South India. Key findings include incorrect beliefs about epilepsy's nature, causes, and management, as well as reports of social stigma and financial burden. These results highlight the urgent need for targeted educational interventions to improve epilepsy awareness, reduce stigma, and enhance treatment adherence. Future research should address the study's limitations through larger, more diverse samples, longitudinal designs, and qualitative methods to gain deeper insights into factors influencing knowledge and attitudes toward epilepsy

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