Functionally Limiting Symptoms and Inability to Independently Complete Daily Activities Increase the Burden Felt by Caregivers to Patients with ATTR-CM

Introduction: The Burden of Disease survey characterized the humanistic burden of transthyretin amyloid cardiomyopathy (ATTR-CM) in 208 international patients not receiving disease-modifying therapy and their primary caregivers. Methods: Post hoc univariate analyses evaluated the relationships between patients’ current symptoms and ability to complete activities of daily living (ADLs) with their caregivers’ Zarit Burden Interview (ZBI), Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue, and Hospital Anxiety and Depression Survey Anxiety (HADS-A) and Depression (HADS-D) subscale scores. Results: Most patients had wild-type ATTR-CM (91%; n = 141/155) and a New York Heart Association functional classification of I/II (78%; n = 156/199). Caregivers (n = 208) were a median age of 68 years, 85% were female, and 66% lived with the patient. Current patient symptoms of paralysis, heart failure, weakness (especially in the legs), leg pain, leg and ankle swelling, loss of sensation in the legs/arms, fatigue, insomnia, and weight loss were associated with a significantly (P < 0.05) higher caregiver ZBI score. Many of these symptoms were also associated with significantly (P < 0.05) higher PROMIS Fatigue and HADS-A scores; heart failure and weakness (especially in the legs) were associated with a significantly (P < 0.05) higher HADS-D score. Inability of patients to independently clean, bathe, cook, get in/out of bed, or walk were associated with significantly (P < 0.05) higher caregiver ZBI and HADS-D scores. Inability to independently clean and walk were associated with significantly (P < 0.05) higher PROMIS Fatigue and HADS-A scores. Conclusions: Burden is higher in caregivers of patients with ATTR-CM who have specific symptoms (including those causing disability) or an inability to independently complete ADLs.