Abstract
Introduction
Transthyretin amyloid cardiomyopathy (ATTR-CM) is a progressive disease predominantly affecting older men and is associated with increasing care needs. Previous international studies have reported that, as ATTR-CM progresses, caregivers experience substantial physical and emotional burden, as well as productivity impairment. However, real-world evidence on caregiver burden in Japan remains limited. This study aimed to characterize multidimensional caregiver and patient burden in Japan.
Methods
Data were drawn from the Adelphi ATTR Disease Specific Programme™, a cross-sectional survey of cardiologists and their consulting patients with ATTR-CM, conducted in Japan between October 2024 and January 2025. Cardiologists completed patient record forms, including patient demographics, clinical characteristics, and caregiving status. Patients and their non-professional caregivers also completed voluntary self-reported questionnaires. Caregiver outcomes included caregiving time, work productivity, and activity impairment (WPAI), and Zarit Burden Interview (ZBI) scores. Patient health status was assessed using the Kansas City Cardiomyopathy Questionnaire (KCCQ). Analyses were descriptive.