Caregiver Burden in Highly Complex Pediatric Drug-Resistant Epilepsy: Associations With Functional Status and Developmental and Epileptic Encephalopathy

BackgroundCaregiver burden is an important consequence of caring for children with highly complex drug-resistant epilepsy (DRE).Although greater functional impairment may increase caregiving demands, burden may also be influenced by developmental and epileptic encephalopathy (DEE) and caregiver characteristics.We aimed to estimate caregiver burden and determine whether child functional status remained associated with burden after accounting for DEE and caregiver characteristics. MethodsWe conducted a cross-sectional analytical study of 59 child-caregiver dyads with highly complex DRE attending a national high-specialty medical center in Mexico City between November 2025 and February 2026.Caregiver burden was assessed using the 22-item Zarit Burden Interview (ZBI), with scores >46 defining overburden.Child functional status was assessed using the Functional Status Scale (FSS).DEE was classified according to an operational definition incorporating frequent seizures and/or epileptiform discharges, developmental slowing or regression, and an underlying etiology contributing to developmental impairment.Logistic regression models evaluated threshold-defined overburden, and a complementary linear model examined continuous ZBI scores. ResultsOverburden was present in 40/59 caregivers (67.8%; 95% CI, 54.4%-79.4%).Among 54 children with available FSS assessments, FSS scores were higher in dyads with overburden than in those without (median 11 (IQR, 9-20) vs 8 (IQR, 7-11.5);p = 0.021).However, the correlation between FSS and continuous ZBI scores was weak and not significant (rho = 0.165; p = 0.233).FSS was associated with overburden in the univariable model (OR per point, 1.14; 95% CI, 1.01-1.29),but this association attenuated after inclusion of DEE and caregiver characteristics and was not significant in the combined model (OR, 1.07; 95% CI, 0.93-1.22).In the combined model, DEE (OR, 8.38; 95% CI, 1.14-61.85)and caregiver age per 10 years (OR, 4.51; 95% CI, 1.26-16.12)were associated with overburden.In the continuous ZBI model, caregiver age was associated with higher burden (B = 6.49points per 10 years; 95% CI, 1.59-11.39),as was parental caregiver status (B = 13.68;95% CI, 2.19-25.16),whereas FSS and DEE were not independently associated with continuous ZBI scores.Individual FSS domains showed no consistent association with burden. ConclusionsCaregiver overburden was frequent in this Mexican cohort of children with highly complex DRE.Although poorer functional status distinguished caregivers with overburden before adjustment, its association weakened after consideration of DEE and caregiver characteristics and was not observed when burden was analyzed continuously.DEE showed a large but imprecise association with threshold-defined overburden, whereas caregiver age was consistently associated with both categorical and continuous measures of burden.These findings suggest that caregiver burden should be understood as a distinct caregiver-level outcome within the broader clinical and family context of highly complex pediatric DRE, rather than solely as a consequence of the child's functional impairment.