Abstract
ObjectivesPatients with atrial fibrillation (AF) have rapid and irregular heart rates, increasing the risk of comorbidities and mortality. Next to formal medical care, many patients receive informal care from their social environment. The objective of this study was to examine the well-being and economic burden of providing informal care to patients with AF in the UK, Italy, and Germany. MethodsCaregivers of patients with AF completed an online survey based on the iMTA Valuation of Informal Care Questionnaire, with questions about their caregiving situation, perceived burden of caregiving, and absence from work due to health problems resulting from caregiving. Care-related quality-of-life utilities were calculated using the Care-related Quality of Life instrument and associated tariffs. Societal costs of caregiving were calculated based on the proxy good method. ResultsA total of 585 caregivers participated in this study. On average, caregivers provided 33 hours of informal care per week to patients (SD 29 hours). On a scale from 0 to 10, their self-rated burden was 5.4. The average Care-related Quality of Life utility was 72. Caregivers primarily indicated problems with daily activities, mental health, and physical health. Still, the vast majority of caregivers (87%) derived fulfillment from providing care. Weekly societal costs of caregiving were on average €636. Comorbidities contributed substantially to the caregiver time and burden. ConclusionsCaring for a patient with AF is associated with substantial objective and subjective burden, but also provides fulfillment from being able to care for a loved one.
Highlights
Atrial fibrillation (AF) is a condition in which the heart rate is rapid and irregular
Patients had AF for 10 years, and almost 50% of patients had permanent AF
The median age (71 years in the current study vs 70-73 years in the clinical trials) was similar compared with the large trial populations with anticoagulants for the treatment of AF, but the proportion of women in this study was higher than in the nonvitamin K antagonist oral anticoagulants clinical trials (36%-40% female patients).[30,31,32,33]
Summary
Atrial fibrillation (AF) is a condition in which the heart rate is rapid and irregular. Providing informal care can have both negative and positive effects on the caregiver’s well-being.[10] On the one hand, providing care might be burdensome, as caregivers have to invest time to care for the patient or might need to perform tasks with which they are not comfortable. Providing informal care might lead to physical and mental health problems or financial difficulties for the caregiver. Caregivers might appreciate providing care for their loved ones.[11] In addition to caregiver well-being effects, providing informal care has an economic societal impact, as time spent on providing informal care has an opportunity cost. In economic evaluations from a societal perspective, inclusion of costs related to informal care is important
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