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

ObjectivesThis 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.DesignA cross-sectional survey design was used.SettingThis 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.ParticipantsPatients with ALS and their caregivers (N=120 pairs) participated in a face-to-face interview.Primary and secondary outcome measuresPrimary outcome measures included the Zarit Burden Interview scores and personal/role burden scores. There were no secondary outcomes.ResultsMultiple 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