Hidden burden: the impact of durable LVAD support on caregivers
I Santos, A M Garcia, C Sampaio, M Presume, A R Bello, S Maltes, B Rocha, C Brizido, C Strong, M Marques, C AguiarAbstract
Background
Caregivers (CG) of patients with advanced heart failure (AHF) supported by durable left ventricular assist devices (LVAD) are essential for therapy eligibility and long-term success. However, the substantial physical and psychosocial distress associated with LVAD management and emergency care are often overlooked, potentially compromising CG well-being, caregiving capacity, patient quality of life and treatment adherence.
Purpose
To describe the burden experienced by the primary CG of patients under LVAD with HeartMate 3™ (HM3).
Methods
This cross-sectional observational study included all patients on HM3 support under follow-up at a single center in 2025. Patients who were on HM3 support for less then 3 months and those recently hospitalized were excluded. The primary CG was identified as the unpaid person providing most of patient’s support. Caregiver burden (CGB) was assess using the Portuguese version of the 22-item Zarit Burden Interview (ZBI) scale. Descriptive and inferential statistical analyses were performed.
Results
Twelve male patients on HM3 for a mean of 31.0 months were included (mean age 61.2 years). Most had AHF of ischemic etiology (58.3%) and were supported as bridge to transplantation (41.7%) or to candidacy (25.0%), and most were in NYHA class II (83.3%). All their CG were female and corresponded to patients’ spouses/partners. Most were older than 50 years (83.3%) and still professionally active (58.3%). The mean ZBI score was 19.2±9.9 (range 3-35) as proposed by the original author, or 41.2±9.9 (range 22-57), according to the Portuguese version by Sequeira, 2010. The most burdensome item related to the CG’s perception of the patient’s perceived dependence on them as CG. According to the cut-offs validated for the Portuguese version, 75.0% of CG had no burden, while 25.0% exhibited some degree of CGB (16.7% mild, 8.3% severe). Among the assessed domains, the presence of CGB was associated with significantly higher scores in the impact of caregiving subdomain (p=0.012), as well as personal strain (p=0.012) and role strain (p=0.024). No significant associations in CGB were observed with NYHA class, INTERMACS profile, LVAD strategy, CG age group or employment status.
Conclusion
In this cohort, CGB was present in one in four CG of AHF patients supported by HM3. These findings underline the importance of structured and systematic CGB assessment as part of standard HM3 care, to enable early identification of at-risk CG and implementation of tailored supportive interventions as needed.