Determining the quality of life of children living with epilepsy in Kenya-A cross-sectional study using the CHEQOL-25 tool.

ABSTRACT

PURPOSE: Epilepsy is a chronic neurological disorder that is often diagnosed in childhood and may negatively impact physical, social and psychological abilities. Most tools measuring quality of life (QoL) rely on parent/caregiver feedback rather than the child's perspective. CHEQOL-25 is a QoL tool that documents both child and caregiver perspectives across five domains. The primary objective was to determine the QoL of children living with epilepsy (CWE) using the CHEQOL-25 tool in a Kenyan paediatric population. Other objectives were to describe the correlation between the caregivers' and children's' perspectives and describe factors affecting QoL. METHOD: We conducted a cross-sectional study across four sites in Nairobi. Quantitative data was collected using a self-administered CHEQOL-25 questionnaire. Caregivers and their children aged 7-15 years attending neurology clinics participated in the study. We used Kappa statistics to compare child and caregiver responses. RESULTS: A total of 354 participants were interviewed (177 children and 177 caregivers). A good QoL was reported by 60.5 % of children with a similar caregiver perception of 56.5 %. Caregivers with little education and male caregivers were associated with a poor QoL (p = 0.01); other socio-demographic factors had little impact on the measured QoL of CWE. Parent and child questionnaires correlated well in terms of response in terms of interpersonal (p = 0.001) and intrapersonal (p = 0.004) domains. CONCLUSION: This study demonstrated that a good quality of life was reported by the majority of CWE and their caregivers, although some factors such as a male caregiver gender and lower level of education were associated with poor QoL.