The Impact of Pediatric Epilepsy on Children and Families: A Multicenter Cross-Sectional Study

Abstract

Background and Objectives: Epilepsy is considered one of the most prevalent causes of morbidity in children. The aim of this study is to determine how epilepsy impacts the lives of children with epilepsy and their families. Methods: A translated version of the “Impact of Pediatric Epilepsy Scale” (IPES) questionnaire was completed by the 80 mothers of children with epilepsy, recruited at three hospitals in Jeddah, Saudi Arabia This is a validated self-administered questionnaire used to assess the impact of epilepsy on the lives of the child and family, as well as the quality of life (QoL) of the child. Results: The mean age of children epilepsy was 6.32 years (SD = 3.22). The mean IPES score was 6.28 (SD = 8.42) and the mean child’s QoL was 2.85 (SD= 0.83). 87.5% of the mothers rated their child’s QoL as low. IPES score was significantly associated with cause of seizure (β=0.259; 95%-CI= 0.263 - 10.334; p = 0.039). Child’s QoL was significantly associated with frequency of seizure (β=0.251; 95%-CI= 0.016 - 0.568; p= 0.039) and child’s nationality (β=-0.270; 95%-CI -0.252, -0.013; p= 0.031). Conclusions: Pediatric epilepsy may have a greater impact on the lives of the child and the family when it is not comorbid with cerebral palsy. Quality of life tends to be lower for non-Saudi children, and children with more frequent seizures. Therefore, these groups may need more support in managing the impact that epilepsy has on their daily functioning and quality of life.

Quality of life among caregivers of children with epilepsy: A cross‐sectional study at Eastern Nepal

“…Some of those impacts are burden, stigma, deprivation from education, problems related to side effects of antiepileptic drugs, and poor QOL. QOL among parents of children with epilepsy was found to be lower as compared to parents of healthy children 5 . In children, epilepsy can be associated with developmental problems such as developmental delay, poor academic performance, inadequate social skills, and psychosocial problems such as attention‐deficit/hyperactivity disorders, intellectual disability, poor self‐esteem.…”

“…Many similar studies have been done in other countries of the world. As mentioned above, various studies have reported poor QOL among caregivers of patients with epilepsy 4‐8 . There is scantiness of literature regarding psychosocial aspects including QOL among caregivers of children living with epilepsy in Nepal where optimum resources are not available for managing childhood epilepsy.…”

“…QOL among parents of children with epilepsy was found to be lower as compared to parents of healthy children. 5 In children, epilepsy can be associated with developmental problems such as developmental delay, poor academic performance, inadequate social skills, and psychosocial problems such as attention-deficit/hyperactivity disorders, intellectual disability, poor self-esteem. In addition to their routine activities, caregivers have to manage time for care and treatment of their children with epilepsy and associated comorbidities that contribute to carers' poor QOL.…”

“…As mentioned above, various studies have reported poor QOL among caregivers of patients with epilepsy. [4][5][6][7][8] There is scantiness of literature regarding psychosocial aspects including QOL among caregivers of children living with epilepsy in Nepal where optimum resources are not available for managing childhood epilepsy. Therefore, the present study was conducted with the aim of assessing QOL among caregivers of children with epilepsy in Nepal.…”

Quality of life in paediatrics with intractable epilepsy in a large paediatric university hospital in Riyadh, Saudi Arabia

“…[ 11 ] Locally, a study was conducted in three hospitals in Jeddah to assess the impact of epilepsy on children. [ 12 ] The cause of seizure, monthly income, and child's nationality were significantly associated with QOL. Hypoxic-ischemic encephalopathy (HIE) and cerebral palsy (CP) were strongly linked with lower QOL.…”