The considerable burden of both living with transthyretin amyloidosis (ATTR) and caring for someone with the disease affects the mental and physical health of patients and caregivers alike, and — especially among those in the U.S. — can hurt their ability to be productive at work, according to a study looking at self-reported burden in these two groups in the U.S. and Spain.
It also found that caregivers report spending more than 45 hours each week — some six hours of each day — giving care.
The study, “Characterizing the High Disease Burden of Transthyretin Amyloidosis for Patients and Caregivers,” was published in the journal Neurology and Therapy.
Findings came from an observational clinical trial (NCT01604122) enrolling two groups of ATTR patients — those familial amyloid polyneuropathy (TTR-FAP) and those with cardiac amyloidosis (TTR-CM) — and their caregivers. In total, 60 ATTR patients and 32 unpaid caregivers, with an average age of 52.2 and disease duration of 6.2 years, answered survey questions that largely focused on disease burden and life quality from February to September 2013 in the U.S., and from November 2013 to May 2014 in Spain.
Five questionnaires or surveys were completed by both caregivers and patients, covering disease burden, health status (physical and mental), and work and productivity. Patients also completed surveys that addressed perceived pain levels, neuropathy, disease-specific health issues, like cardiomyopathy. Caregivers had a questionnaire that covered burden and strain particular to their role.
A considerable percentage of U.S. caregivers (40.6%) also had ATTR, the study noted, while none of those in Spain did. These caregivers, not surprising, did poorer in assessments of mental and physical well-being, and work productivity than others.
“Specifically, US versus Spanish caregivers, respectively, reported greater burden in the relationship with the patient (9.0 ± 4.6 versus 3.4 ± 4.0), lower emotional well-being (9.9 ± 6.1 versus 4.1 ± 2.0), worse social and family life (6.1 ± 3.5 versus 2.6 ± 1.8), and greater loss of control over life (7.8 ± 3.2 versus 3.3 ± 1.9),” the researchers reported, looking at scores on the Zarit Burden Interview given only to caregivers.
“Scores on the ZBI were comparable between caregivers with and without ATTR amyloidosis. Financial burden due to caregiving was reported by caregivers in both countries,” they added.
Results overall indicated that caregivers were under substantial burden, reporting that a large percentage of time spent each week on providing care (a mean of 45.9 hours). Levels of depression and anxiety that affected their mental health were also high, and ability to be productive at work was poor — particularly among caregivers in the U.S.
Among patients, about 33% were employed, and those in the U.S. reported “greater impairment in work and productivity compared with patients in Spain,” the study reported, including missing almost 22%, on average, of work in the week before taking the survey due to their disease.
Patients in both countries felt highly limited in their activities, with 48.3% saying they were unable to complete basic household chores and were restrained in mobility, self-care, and other activities.
Patients who had a liver transplant reported better overall outcomes than those who did not. Non-transplant patients also reported a greater impact on physical versus mental health.
Other notable findings included a high rate of healthcare utilization among patients in the three months prior to the survey: 21.7% visited an emergency room, 15% were hospitalized, and 80% used an outpatient healthcare provider.
These findings highlight the need for “[t]reatment options that move beyond symptomatic management to modification of disease progression and maintenance of psychosocial functioning may reduce the impact on patients and their reliance on their caregivers, thus alleviating the substantial disease burden,” the study concluded.