Study reveals high burden on patients and families affected by ATTR-CM

The results suggested that a loss of mobility plays a major role in disease burden.

A new study published in Frontiers in Cardiovascular Medicine assessed the disease burden in people with transthyretin amyloid cardiomyopathy (ATTR-CM) and their caregivers. The results found that heart failure symptoms, especially weakness in the legs, were the most significant factors associated with decreased quality of life in patients. For caregivers, their loved one’s overall health status played the biggest role in predicting caregiver strain.

Researchers examined survey responses from 208 patient-caregiver pairs across seven countries. The majority of the patients in the study were elderly men (the median age was 81) with untreated wild-type ATTR-CM. The caregivers were mostly women and mainly the spouses or adult children of those affected by the disease.

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Those experiencing moderate symptoms of heart failure reported the most significant disease burden. Particularly, having weakness in the legs negatively impacted quality of life, “suggesting that mobility is an important determinant of patient burden,” the researchers wrote. They noted other research which has shown that the loss of mobility in older adults affects not only their physical functioning but their mental health, as well. 

The study results also found female sex and older age to be predictors of high patient burden with ATTR-CM. Previous research has found that heart failure has a more substantial effect on quality of life in women than in men, though the reasons aren’t fully understood. 

Perhaps not surprisingly, the main indicator of caregiver strain was how sick their loved one was. Other factors like caregiver age, sex, their relationship to the patient and the intensity of caregiving duties did not appear to play a role in caregiver burden.

The researchers say the study findings emphasize the importance of early intervention and symptom management in ATTR-CM not only to improve patients’ lives but also to reduce caregiver strain.

“Proactively assessing the physical symptoms of ATTR-CM and implementing strategies to reduce their impact may help to reduce burden experienced by patients and their caregivers,” they concluded.

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