PROJECT SUMMARY Strategies to improve outcomes in heart failure have largely focused on prescribing medications, dietary modifications and exercise to improve hemodynamics and relieve congestion. Despite these efforts, patients with heart failure are still plagued by repeated hospitalizations that can degrade their quality of life and place a heavy burden on society. While social support networks are integral to a patient?s ability to manage their heart failure and maintain clinical stability, current approaches to the care of heart failure do not adequately integrate support systems. One key component of the social support network is the patient?s caregivers, many of whom are family and friends that help patients meet the daily demands of their condition. Before we can design effective care delivery systems that optimally engage caregivers, we need a better understanding of the care that they are providing and the impact that care has on patient outcomes. This proposal aims to investigate the experiences of caregivers of patients with heart failure and understand how those experiences impact the health and outcomes of both patients and caregivers. In Aim 1, patients with heart failure and their caregivers will be recruited using the resources of the Rochester Epidemiology Project, a population-based medical records linkage system for patients living in Southeastern Minnesota. Using a mixed-methods approach, we will prospectively examine caregiving experiences and evaluate how positive and negative aspects of caregiving are associated with patient and caregiver quality of life and patient risk of hospitalization. Given the prominent role that spouses play in the care of patients with chronic conditions such as heart failure, in Aim 2 we will evaluate the association between spousal health and patient outcomes. Using our existing epidemiologic cohort of patients with newly diagnosed heart failure from 2000-2012, we will electronically link patient medical record data with their spouse?s comprehensive longitudinal health history. This rich dataset will enable us to test the hypotheses that worse spousal health is associated with worse patient outcomes after diagnosis and that spousal healthcare utilization increases after patient death. Our research team is uniquely positioned to do this work given our expertise in community-based epidemiologic studies, heart failure, and caregiving. The real-world demographics and roles of caregivers of patients with HF and the impact of caregiving experiences on patient and caregiver outcomes has never been examined in an epidemiologic community setting. The ability to identify, characterize and longitudinally follow patient-caregiver dyads is uniquely possible given the rich resources of the Rochester Epidemiology Project. These findings will provide important insights into the patient?s social support environment and enable us to develop new models that engage caregivers in the longitudinal care of patients with heart failure.
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