The quality of life among children with epilepsy in resource-limited settings: A pilot study in a paediatric neurology clinic at a quaternary care teaching hospital

Abstract

Background. An important part of holistic care management of children with epilepsy (CWE) is measuring their health-related quality of life (HRQOL). However, little is known about the HRQOL of CWE who live in resource-limited settings, particularly in South Africa. Objectives. To assess the HRQOL of CWE and to identify the possible factors that correlate with HRQOL including demographic variables and epilepsy health-related factors. Methods. A cross-sectional prospective quantitative study was undertaken at the paediatric neurology outpatient clinic at Inkosi Albert Luthuli Hospital (IALCH), a quaternary care teaching hospital in Durban, South Africa. Participants were recruited during the period between December 2019 and February 2020. CWE between 2 and 12 years old with no comorbid syndromic disorder or other chronic diseases accompanied by English-speaking caregivers were included in the study. We used the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) generic core parent-proxy questionnaire modified with separate sociodemographic and epilepsy data collection sheets. Results. One hundred and twenty participants were recruited. The majority of patients (54.2%) had generalised epilepsy. The aetiology of epilepsy was unknown in 40.8% of patients. The most commonly used anti-seizure medication was sodium valproate (39.2%). The mean of the total score of HRQOL (SD) (coefficient of variation %) was 66.7 (24.1 (36.1). School attendance p-value<0.001, financial aid for indigent families p 0.047, monotherapy p<0.001, absence of disability p<0.001 and absence of comorbidity p <0.001were strongly associated with good HRQOL total scores. Conclusion. CWE attending IALCH in Durban, South Africa, have compromised HRQOL scores. The variables that significantly correlate with better HRQOL scores are school attendance, receiving financial aid for indigent families, monotherapy, and absence of disabilities and comorbidities. We recommend a multicentre study that involves a larger number of epileptic children with the employment of the epilepsy-specific PedsQL 4.0 module translated into local languages.