Impact of Caring for Individuals With Heart Failure in the United States

BACKGROUND: Given the functional impairments and complex care routines associated with heart failure (HF), patients often rely on the support of informal caregivers. Although the importance of caregivers' roles is widely recognized, the intensity and time required for care duties may negatively impact caregiver health and well-being, potentially precipitating their own need for care. OBJECTIVE: The aim of this study was to synthesize estimates of economic, clinical, burden, and health-related quality-of-life impact among caregivers of those with HF in the United States. METHODS: A systematic review was conducted to identify studies reporting estimates of caregiver impact. Abstract and full-text review as well as data extraction were performed according to established guidelines. Patient and caregiver characteristics were summarized, as well as estimates of impact of caring for those with HF. RESULTS: From 3680 abstracts, 44 studies reporting caregiver burden estimates were included. Mean caregiver age ranged from 41.4 to 71.4 years; caregivers were primarily female (range, 49%-100%) and the patient's spouse/partner (21%-100%). Time spent caregiving (6 studies) ranged from 2 to 52 h/wk, and depression was identified in up to 40% of caregivers (9 studies). Numerous instruments were used to measure burden, which consistently documented the high impact of caregiving. CONCLUSIONS: This review demonstrates the multifaceted impact of caregiving for patients with HF. Despite limited data, notable findings included the considerable burden to caregivers, variability in time spent caregiving, and frequent experience of depression among caregivers, possibly leading to increased healthcare resource use. Future research is needed to better characterize the caregiving impact in HF, including evaluating the drivers of burden.