JHLT Open · Published 2026-06-23 · DOI 10.1016/j.jhlto.2026.100617
Tingqing Wu, Michael Petty, Mary Amanda Dew, James K. Kirklin, Eileen Hsich, Maryl Johnson, Scott Silvestry, Andrew Kao, Brent Lampert, Salpy V. Pamboukian, Margaret Murray, Melana Yusefpolskaya, Jerian Dixon-Evans, Kathleen L. Grady
Background: Caregiver health-related quality of life (HRQOL) and burden are essential considerations for caregivers of older patients with heart failure (HF) undergoing advanced surgical therapies. We aimed to evaluate change in HRQOL and burden from baseline to 2 years following surgery and identify factors associated with HRQOL in caregivers of patients who underwent heart transplantation (HT, with or without pre-transplant mechanical circulatory support [MCS] HT MCS or HT Non-MCS, respectively) or long-term MCS. Methods: Caregivers, recruited from 13 U.S. sites, completed measures of HRQOL (EQ-5D-3L), burden (Oberst Caregiving Burden Scale), and other measures at baseline, 3, 6, 12, 18, and 24 months after patients’ surgery. Analyses included multivariable linear mixed effects models. Results: The cohort of 229 caregiver-patient dyads included caregivers for patients who underwent long-term MCS = 99; HT MCS = 55; or HT Non-MCS = 75. Caregivers were median age = 64[59, 68] years, 87% female, 85% White, 98% spouses, and 86% with co-morbidities. Baseline-24 months post-surgery, caregiver EQ-5D-3L visual analog scale average score ranges were high and stable: long-term MCS = 81-83, HT MCS = 84-88, and HT Non-MCS = 84-87, with no significant change within groups nor cross-sectional differences between groups at all time periods. Burden was low-moderate. Caregiver HRQOL was positively associated with caregiver working and caregiver perception that their own health would remain the same/improve over time and negatively associated with >3 caregiver comorbidities, caregiver gastrointestinal disease, caregiver diabetes, and patient obesity. Conclusions: Caregivers had high/stable HRQOL and low-moderate perceptions of burden through the 2-year follow-up, providing important information when preparing caregivers of patients who will undergo advanced surgical therapies.
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Wu, T., Petty, M., Dew, M., et al. (2026). Does caregiver HRQOL and burden change over 2 years after heart transplantation or durable mechanical circulatory support implantation in older patients? Findings from SUSTAIN-IT. JHLT Open. https://doi.org/10.1016/j.jhlto.2026.100617