Child clinical complexity and caregiver burden in pediatric epilepsy

Résumé fourni par la source

Caregivers of children with epilepsy often experience impaired well-being and high burden, but it is unclear how multidimensional clinical complexity and access to resources shape these outcomes. We conducted a single-center, mixed-channel, electronic cross-sectional questionnaire survey of primary caregivers of children with epilepsy ( N = 551). Participants were recruited through center-coordinated outpatient, inpatient, online, and caregiver/patient support-network channels. Severe caregiver burden (BSFC-s ≥ 15) was specified as the primary inferential outcome, and low well-being (WHO-5 < 50) was examined as an additional clinically relevant caregiver outcome. We constructed a Clinical Complexity Index (CCI; 0–6) and a Resource Access/Use Score (RAS; 0–4). Multivariable logistic regression examined the association between CCI and severe caregiver burden, while resource-related interaction and cross-sectional path analyses were prespecified as exploratory secondary analyses. Low well-being (WHO-5 < 50) and severe caregiver burden (BSFC-s ≥ 15) were common (75.5% and 66.6%, respectively). In the fully adjusted main-effects model (Model 3), each 1-point increase in CCI was associated with higher odds of severe caregiver burden (aOR = 1.67, 95% CI 1.44–1.94). RAS was not independently associated with severe burden in Model 3. The exploratory CCI × RAS interaction was statistically supported (aOR = 0.87, 95% CI 0.77–0.99), suggesting that the complexity–burden association varied across RAS levels. The central finding was that higher caregiver-relevant clinical complexity was consistently associated with severe caregiver burden. Resource-related interaction and psychosocial path findings provide exploratory context and require longitudinal validation before being used to infer mechanisms, resource effects, or care pathways.

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