Caregiver burden and associated factors among primary caregivers of patients with ALS in home care: a cross-sectional survey study

OBJECTIVES: This study aims to understand the caregiver burden experienced by the primary caregivers of patients with amyotrophic lateral sclerosis (ALS), and to explore the factors influencing caregiver burden. DESIGN: A cross-sectional survey design was used. SETTING: This study was conducted with ALS inpatients and follow-up outpatients at the neurology department of a tertiary general hospital in Taiyuan, Shanxi, China and their caregivers. PARTICIPANTS: Patients with ALS and their caregivers (N=120 pairs) participated in a face-to-face interview. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcome measures included the Zarit Burden Interview scores and personal/role burden scores. There were no secondary outcomes. RESULTS: Multiple linear and logistic regression analyses were performed to examine the factors influencing burden in ALS patient’s caregivers. Multiple linear regression showed that caregivers with higher Anxiety Index (AI) experienced greater personal (β=0.089, p<0.001), role (β=0.065, p<0.001) and overall (β=0.200, p<0.001) burden. Logistic regression analysis showed that AI (p=0.025; OR 1.351, 95% CI 1.038 to 1.759) and disease knowledge level (p=0.033; OR 0.305, 95% CI 0.107 to 0.593) are the influencing factors of ALS load classification. CONCLUSIONS: Higher AI scores were associated with greater caregiver burden. Caregiver burden of caregivers who had no knowledge of the patient’s disease was 0.305 times that of those who had good knowledge. The level of disease knowledge and AI score can serve as key predictors of caregiver burden in ALS.