Determining the Quality of Life of Children Living with Epilepsy in Kenya: a Cross-Sectional Study Using the CHEQOL-25 Tool

Background: Children with epilepsy (CWE) in low/lower-middle income countries are likely to experience lower health-related quality of life (HrQoL) due to poverty and stigma, especially in sub-Saharan Africa. Few studies have measured this reliably, as most tools capture caregiver rather than child responses; the CHEQOL-25 tool, however, collects both child and caregiver perspectives across five domains: ‘interpersonal/social’, ‘present concerns’, ‘intrapersonal/emotional’, ‘secrecy’, and ‘normality’.

Objective: To measure HrQoL in CWE using CHEQOL-25 at paediatric outpatient settings in Nairobi, Kenya.

Methods: We conducted a prospective cross-sectional study, enrolling CWE aged 7-15 years and their caregivers. Good HrQoL was defined as CHEQOL-25 score >60 and >50 for CWE and caregiver respectively. CWE-caregiver corroboration was assessed using Kappa statistic; multivariate linear regression analysis elucidated factors affecting HrQoL.

Results: We surveyed 177 CWE-caregiver couples [CWE median age 11 years (range 8-13); 53.1% (94/177) male]. The commonest seizure type [66.7% (118/177)] was tonic-clonic [median onset age 5(2-8) years; 41.8% (74/177) on one anti-epileptic]. 75.3% (133/177) of CWE visited clinic more than twice in the preceding six months due to uncontrolled seizures. 60.5% (107/177) of CWE and 56.5% (100/177) of caregivers reported good HrQoL (CHEQOL-25 scores 60.6/100 and 60.4/100 respectively), with significant CWE-caregiver response corroboration in the ‘interpersonal/social’ and ‘intrapersonal/emotional’ domains (p<0.005). Good HrQoL was significantly less likely for CWE with: (i) male caregivers [odds ratio (OR)=0.37; 95% confidence interval (CI) 0.17-0.81; p=0.001]; and (ii) caregivers with less than full primary education [OR=0.41(0.17-0.980; p=0.04]. 55.3% (98/177) of CWE had a close-knit (n≤4 members) circle of friends, with increasing friend numbers being positively associated with good HrQoL [OR=1.09(1.01-1.17)].

Conclusion: HrQoL was good in the majority of our cohort – as reported by both CWE and their caregivers – especially if the child had a bigger friends circle, but HrQoL was not good if the caregiver was male or uneducated.