Transcript
Ryan Quigley:
Welcome to AudioAbstracts on ReachMD. I’m Ryan Quigley, and today, I’ll be sharing new findings on caregiver burden in transthyretin amyloid cardiomyopathy, or ATTR-CM, published in Cardiology and Therapy in December 2025.
ATTR-CM is a progressive and often underdiagnosed condition characterized by restrictive cardiomyopathy and heart failure, primarily affecting older adults. As the disease advances, patients frequently experience functional decline and increasing dependence on caregivers. While prior research has established that ATTR-CM imposes a significant burden on both patients and caregivers, this study more specifically evaluates how patient symptoms and limitations in specific activities of daily living, or ADLs, influence caregiver burden.
This post hoc analysis draws on data from the international Burden of Disease survey, which included 208 patients with untreated ATTR-CM and their primary unpaid caregivers. Of these, 155 patients were included in the post hoc univariate analysis. The cohort was predominantly older, with a median age of 81 years. 91 percent had wild-type ATTR-CM, and 78 percent were classified as New York Heart Association functional class one or two. Among the 208 caregivers, the median age was 68 years, 85 percent were female, and 66 percent lived with the patient.
The investigators examined associations between patient-reported symptoms, ability to complete ADLs, and caregiver outcomes, including overall burden, fatigue, anxiety, and depression. Caregiver burden was assessed using validated tools such as the Zarit Burden Interview, or ZBI, PROMIS Fatigue, and the Hospital Anxiety and Depression Scale, or HADS-A.
If we turn now to the results, the ZBI scores highlight that specific patient symptoms, particularly those affecting mobility and physical function, were significantly associated with increased caregiver burden. These included heart failure symptoms, weakness—particularly in the legs—fatigue, insomnia, leg and ankle swelling, leg pain, and neurologic symptoms, such as loss of sensation in limbs, paralysis, and weight loss. Many of these symptoms were also associated with significantly higher caregiver fatigue and anxiety scores, as measured by PROMIS Fatigue and HADS-A, while heart failure and lower-extremity weakness were additionally linked to higher depression scores on HADS-D.
Loss of independence was a key driver of burden. Patients requiring help with several ADLs, including bathing, cooking, cleaning, walking, or getting in and out of bed, had caregivers with significantly higher ZBI scores. Notably, impairments in cleaning and walking were also associated with increased caregiver fatigue and anxiety, based on PROMIS Fatigue and HADS-A. In some instances, even partial dependence—where patients required help—was associated with increased caregiver burden and psychological distress. More broadly, poorer patient physical and mental health correlated with higher caregiver burden across ZBI, as well as higher fatigue, anxiety, and depression scores on PROMIS and HADS.
Taken together, these results emphasize the importance of clinical interventions to prevent functional decline in patients with ATTR-CM. Strategies aimed at preserving mobility and independence may benefit patients while reducing caregiver burden. Targeted support for caregivers, including education, home visits, and psychosocial support, may help mitigate burden, and should be considered as part of ATTR-CM care.
This has been an AudioAbstract, and I’m Ryan Quigley. To access this and other episodes in our series, visit ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening!
Reference:
Cappelli F, Ponti L, Smorti M, et al. Functionally Limiting Symptoms and Inability to Independently Complete Daily Activities Increase the Burden Felt by Caregivers to Patients with ATTR-CM. Cardiol Ther. 2026;15(1):43-58. doi:10.1007/s40119-025-00439
