To comprehensively assess the burden level of caregivers for patients with autoimmune encephalitis (AE) and identify key influencing factors.
Approach:
Study Design: A cross-sectional study involving 151 AE inpatients and their primary caregivers recruited from a tertiary hospital in Shanghai.
Assessment Tools: 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).
Statistical Analysis: Univariate, correlation, and multiple linear regression analyses were employed to identify factors associated with caregiver burden.
Key Findings:
Mean ZBI score was 36.50 ± 19.97, with 24.50% of caregivers experiencing no/mild burden, 35.76% moderate burden, and 39.74% severe burden.
Four significant predictors of caregiver burden identified: 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].
Interpretation:
Limitations:
The study used convenience sampling, which may limit generalizability.
The cross-sectional design does not allow for causal inferences.
