Caregivers of Patients With Left Ventricular Assist Devices

The 2013 International Society for Heart and Lung Transplantation Guidelines for Mechanical Circulatory Support emphasize the importance of caregiver support for left ventricular assist device (LVAD) placement, recommending that a lack of support should serve as a relative contraindication to device placement. Despite the integral role that caregivers are expected to play, findings from studies on LVAD caregivers are limited. Most of these studies are qualitative, exclusively focus on caregivers’ experiences or burdens, and fail to examine specific mechanisms of support and the impact of caregiver support on patient mortality or morbidity events. How caregivers contribute to positive or negative patient mortality or morbidity events is unclear. Without this foundational understanding, there will be variability across LVAD programs and among candidates with regard to how much emphasis to place on caregiver support, how such support should be assessed, and at what threshold an absence of support becomes Background—How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers’ psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients’ post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support–defined morbidity events. Methods and Results—We retrospectively reviewed and recorded social workers’ clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan–Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P=0.01), a caregiver who has identified a backup plan (P=0.02), and a caregiver who is able to provide logistical support (P=0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles (P=0.03) and those who have an extended family who can care for the patient (P=0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone (P=0.04). No caregiver characteristics were significantly associated with morbidity. Conclusions—This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver understanding of patient severity of illness and caregiver presence. This study provides initial evidence to support further work in understanding the associations between caregivers and LVAD patients, as well as interventions that may improve patient outcomes. Clinical Trial Registration—URL: http://www.clinicaltrials.gov. Unique identifier: NCT02248974. (Circ Cardiovasc Qual Outcomes. 2017;10:e002879. DOI: 10.1161/CIRCOUTCOMES.116.002879.)