- Caregiver burden is substantial in AE: mean ZBI 36.5; 39.7% severe, 35.8% moderate, 24.5% none or mild.
- Primary predictors of burden: higher caregiver anxiety, difficulty affording medical expenses, lack of previous care experience, and lower preparedness.
- Patient functional severity affects burden indirectly via caregiver factors; targeted interventions needed: mental health support, enhanced care preparation, peer mentorship, socioeconomic assistance.
Front Neurol. 2026 Jul 1;17:1763795. doi: 10.3389/fneur.2026.1763795. eCollection 2026.
ABSTRACT
BACKGROUND: Caregiver burden is a critical issue in neurological disorders, but remains underexplored in autoimmune encephalitis (AE), a severe condition on patients and their caregivers. Understanding the burden level and its determinants is essential for developing effective support systems. This study aimed to comprehensively assess the burden level of caregivers for patients with AE and identify key influencing factors.
METHODS: In a cross-sectional study, 151 AE inpatients and their primary caregivers were recruited by convenience sampling from the neurology department of a tertiary hospital in Shanghai between March 2023 and June 2024. Patient status was assessed using the Barthel Index (BI) and Modified Rankin Scale (mRS). Caregivers completed the Zarit Burden Interview (ZBI), Caregiver Preparedness Scale (CPS), and Self-Rating Anxiety Scale (SAS), alongside a sociodemographic questionnaire. Univariate, correlation, and multiple linear regression analyses were employed to identify factors associated with caregiver burden.
RESULTS: The mean ZBI score was 36.50 ± 19.97, with 24.50% of caregivers having no/mild burden, 35.76% moderate burden, and 39.74% severe burden. Multiple linear regression identified four significant predictors of caregiver burden: caregivers’ anxiety level [β = 0.513, 95%CI (0.381, 0.645), p < 0.001], ability to afford medical expenses [β = 0.131, 95%CI (0.010, 0.252), p < 0.05], previous care experience [β = -0.157, 95%CI (-0.270, -0.044), p < 0.01], and caregiver preparedness [β = -0.175, 95%CI (-0.301, -0.049), p < 0.01].
CONCLUSION: Caregiver burden in AE is significantly associated with higher anxiety levels, greater financial strain, lack of previous care experience, and lower preparedness. Patient functional severity exerts an indirect association with caregiver burden through caregiver-related factors. These findings highlight the need for targeted interventions including mental health support, enhanced care preparation, peer mentorship initiatives, and socioeconomic assistance to reduce caregiver burden and improve care quality for AE patients.
PMID:42459859 | PMC:PMC13368981 | DOI:10.3389/fneur.2026.1763795
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