Abstract

Introduction: Advanced HF requires tremendous resources, and family caregivers generate significant health related cost-savings. Earlier work in the REVIVAL study demonstrated that increased baseline caregiver (CG) burden is associated with subjects exhibiting lower preference for ventricular assist device (VAD) therapy. Hypothesis: We examined whether 1) CG study participation and 2) CG burden predict combined outcome of death, VAD or UNOS 1 transplant in ambulatory advanced HF patients. Methods: We compared REVIVAL subjects with and w/o a participating CG, defined as a consented CG who completed at least one baseline quality of life (QOL) survey. Baseline characteristics were evaluated and the hazard ratio for CG vs. no CG for the combined outcome was determined by a Cox model. Results: Of 337 subjects, 95 (28%) identified participating CGs. CGs were 59 ± 14 yrs old, more commonly female (80%), a spouse/domestic partner (76%), and lived in the same home (86%). Subjects with a participating CG were older (62± 12 vs 59 ± 11 yrs, p=0.025). There were no differences in INTERMACS profile, NYHA class, HF risk scores, renal function or QOL. . Subjects without a participating CG were numerically more likely to experience the outcome of death, VAD or transplant by 1 year compared to those with a participating CG (26% vs. 17%), but the difference in event rate was not statistically significant (HR 1.65, CI 0.96-2.83, p=0.07). (Figure) There was no significant difference in primary endpoint based on CG burden or CG QOL as assessed by Oberst scale or EQ-5D index. Conclusions: In the REVIVAL study, less than one third of ambulatory advanced HF patients had a participating CG, raising the question of whether patients are more likely to progress to advanced HF if lacking a CG. Additionally, not having a participating CG may be related to worse HF outcomes. These data emphasize the need for larger studies to better understand the complex dynamics of the patient-caregiver dyad.

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