BACKGROUND: The outlook for ambulatory patients with advanced heart failure (HF) and the appropriate timing for left ventricular assist device (LVAD) or transplant remain uncertain. The aim of this study was to better understand disease trajectory and rates of progression to subsequent LVAD therapy and transplant in ambulatory advanced HF. METHODS: Patients with advanced HF who were New York Heart Association (NYHA) Class III or IV and Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) Profiles 4 to 7, despite optimal medical therapy (without inotropic therapy), were enrolled across 11 centers and followed for the end-points of survival, transplantation, LVAD placement, and health-related quality of life. A secondary intention-to-treat survival analysis compared outcomes for MedaMACS patients with a matched group of Profile 4 to 7 patients with LVADs from the INTERMACS registry.

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Objectives The aim of this study was to assess patient and physician perceptions of heart failure (HF) disease severity and treatment options. Background The prognosis for ambulatory patients with advanced HF on medical therapy is uncertain, yet has important implications for decision making regarding transplantation and left ventricular assist device (LVAD) placement. Methods Ambulatory patients with advanced HF (NYHA class III–IV, INTERMACS profiles 4–7) on optimized medical therapy were enrolled across 11 centers. At baseline, treating cardiologists rated patients for perceived risk for transplant, LVAD, or death in the upcoming year. Patients were also surveyed about their own perceptions of life expectancy and willingness to undergo various interventions. Results At enrollment, physicians regarded 111 (69%) of the total cohort of 161 patients to be at high risk for transplant, LVAD, or death, while only 23 patients (14%) of patients felt they were at high risk. After a mean follow-up of 13 months, 61 (38%) patients experienced an endpoint with 33 (21%) deaths, 13 (8%) transplants, and 15 (9%) LVAD implants. There was poor discrimination between risk prediction among both patients and physicians. Among physician-identified high risk patients, 77% of patients described willingness to consider LVAD, but 63% indicated that they would decline one or more other simpler forms of life-sustaining therapy such as ventilation, dialysis, or a feeding tube. Conclusions Among patients with advanced HF, physicians identified the majority to be at high risk for transplant, LVAD, or death while few patients recognized themselves to be at high risk. Patients expressed inconsistent attitudes toward lifesaving treatments, possibly indicating poor understanding of these therapies. Educational interventions regarding disease severity and treatment options should be introduced prior to the need for advanced therapies such as intravenous inotropic therapy, transplantation, or LVAD.