Development and Initial Validation of the Assessment of Caregiver Experience With Neuromuscular Disease

Abstract

The initial validation demonstrated that ACEND is a valid, disease-specific measure to quantify experience on caregivers of children with NMD. Larger groups of patients across NMD disease type are currently being tested to strengthen validity findings. Additionally, the ACEND is now being administered before and after orthopaedic interventions to determine responsiveness, which is critical to health outcomes research. LEVEL OF EVIDENCE/RELEVANCE: IIc.