Evaluation of assessment of caregiver experience with neuromuscular disease: reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy

Cerebral palsy (CP) is the most common cause of chronic childhood disability. Caregivers often provide prolonged care over patients' life span, thus measuring the impact of the disease and its treatments on caregivers has become a recent focus in research. The current study aims to present an evaluation of the reliability and responsiveness of assessment of caregiver experience with neuromuscular disease (ACEND) following botulinum toxin injection to relieve spasticity in children with CP. Patients with baseline ACEND scores and at least one assessment following botulinum toxin injection were enrolled. Data on their gender, age, diagnoses, and functional levels (according to The Gross Motor Function Classification System, GMFCS), and ACEND scores were analyzed. Statistical analyses performed included paired -test and linear regression. Baseline ACEND scores (117.7±47.7) were strongly correlated with follow-up scores (120.4±49.5) with a coefficient of 0.929 (P