Association of Patient Health-Related Quality of Life and Caregiver Burden in Older Heart Failure Patients Receiving Advanced Therapies: Findings from the SustainIng QualItY of Life of the Aged: Transplant or Mechanical Support (SustAIn-it) Study

Purpose Caregivers (CGs) of patients (PTs) with heart failure (HF) experience substantial CG burden. Poor PT health-related quality of life (HRQOL) correlates with increased CG burden in other chronic disease. We evaluated the relationship between PT HRQOL and CG burden in older PTs receiving left ventricular assist devices (LVAD) as destination therapy (DT) or awaiting heart transplant (HT) with or without an LVAD. Methods Data were from SUSTAIN-IT, a study of PT and CG HRQOL in adults age 60-80 receiving DT LVAD or HT. PT HRQOL was assessed by EQ-5D-3L Visual Analog Scale (VAS) score: 0-100 (worst-best) & HF-specific KCCQ-12 summary score (SS), 0-100=low-high. CG burden was assessed by Oberst Caregiving Burden Scale (OCBS) assessing perceptions of CG difficulty & time (1-5; higher score=more time & difficulty). Baseline CG burden, PT HRQOL, and changes from 0 to 6 months were compared by linear regression. Results Data from 302 PTs and CGs were analyzed: 109 DT LVAD, 193 HT (101 without LVAD & 92 with LVAD). KCCQ-12 and EQ-5D VAS scores increased significantly from 0 to 6 months (p Conclusion PT HRQOL generally correlated with CG burden in older HF PTs before and early after DT and HT. Improved PT HRQOL did not correlate with decreased CG burden in HT, but may be associated in DT LVAD. These findings may guide support needs of CGs of PTs undergoing advanced therapies.