Abstract 18224: Patient and Caregiver Perceptions of Living with a Left Ventricular Assist Device as Destination Therapy
LVADs have been shown to improve survival in patients with end-stage heart failure. Initially developed as a bridge to transplantation, LVADs are now implanted permanently as destination treatment (DT) or end of life treatment. While the number of LVAD-DT implants is increasing, there remains a paucity of research on the experiences of patients and their caregivers and the impact of living with this device. The objective of this study was to examine changes in the perception of burden of treatment for patients and caregivers prior to and following the LVAD implant.
Methods: A sample of 25 patients and caregivers one month to 2-years post-LVAD implant were surveyed using a one item (rating 0-100) visual analog scale (VAS) with “0” being “not at all burdened” to “100” being “extremely burdened.” Patients and caregivers were asked to rate their perceptions of the burden of treatment (eg, medications, diet, daily weights, appointments) prior to the implant and their present perceptions post-LVAD implant.
Findings: For the majority of patients, the perceptions of the burden of treatment dramatically decreased post-LVAD implant, with no trend based on time since implant. Conversely, caregivers continued to rate their perceptions of the burden of treatment post-LVAD implant at pre-implant levels or higher.
Conclusions: A disparity exists in the perception of burden post-LVAD implant between patients and caregivers. Patients post-LVAD-DT implant rate the burden of treatment lower than caregivers. Caregivers continue to perceive increased rates of the burden of treatment related to general care (eg., diet, medications) and the care required to maintain the LVAD-DT such as battery support, uncertainty related to device failure, and drive line care.
Implications: The incongruent perceptions of the burden of treatment post-LVAD-DT between patients and caregivers has important practice implications. Caregivers are the main source of support for these patients and need to be considered as both co-providers and co-recipients of care. Thus caregivers’ needs must also be assessed and interventions targeted to improve the experiences of both patients and caregivers as they live through this end-of-life trajectory.
- © 2011 by American Heart Association, Inc.