Patient and Caregiver Health-related Quality of Life and Caregiver Burden While Awaiting Heart Transplantation: Findings From the Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support (SUSTAIN-IT) Study.

Background: We sought to compare change over time (baseline to 2 y) in health-related quality of life (HRQOL) between older (60-80 y) patients awaiting heart transplantation (HT) with mechanical circulatory support (MCS) versus without MCS and their caregivers and caregiver burden.

Methods: This study was conducted at 13 United States sites. Patient HRQOL was examined using the EuroQol 5-dimensional questionnaire (EQ-5D-3L) and Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12). Caregiver measures included the EQ-5D-3L and Oberst Caregiving Burden Scale, measuring time on task and difficulty. Analyses included analysis of variance, χ, and linear regression.

Results: We enrolled 239 HT candidates (n = 118 with MCS and n = 121 without MCS) and 193 caregivers (n = 92 for candidates with MCS and n = 101 for candidates without MCS). Baseline differences in HRQOL were observed between HT candidates with and without MCS: EQ-5D-3L visual analog scale (VAS) score (67.7 ± 17.6 versus 54.1 ± 23.3, < 0.001) and KCCQ-12 overall summary score (59.9 ± 21.0 versus 48.9 ± 21.6, < 0.001), respectively. HT candidates with MCS had significantly higher EQ-5D-3L VAS scores and KCCQ-12 overall summary score across time versus without MCS. Baseline EQ-5D-3L VAS scores did not differ significantly between caregivers of HT candidates with and without MCS (84.6 ± 12.9 versus 84.3 ± 14.4, = 0.9), respectively, nor were there significant between-group differences over time. Caregivers for HT candidates with MCS reported more task difficulty (range: 1 = not difficult to 5 = extremely difficult) versus caregivers for those without MCS at baseline (1.4 ± 0.5 versus 1.2 ± 0.3, = 0.004) and over time.

Conclusions: Understanding differences in HRQOL and caregiver burden among older HT candidates with and without MCS and their caregivers may inform strategies to enhance HRQOL and reduce burden.