Conflicting Perceptions of Prognosis and Treatment Options between Physicians and Patients with Advanced Heart Failure: Results From the Medical Arm of Mechanically Assisted Circulatory Support (Medamacs) Registry

Introduction: The prognosis for ambulatory advanced heart failure (HF) patients on oral therapy is unknown, yet has important implications for decision making regarding transplant and left ventricular assist device (LVAD). We hypothesized that there would be a disconnect between patient and physician perceptions of disease severity and treatment options. Methods: Ambulatory patients with advanced HF (NYHA class III-IV, INTERMACS profiles 4–7) were enrolled across 10 centers from 05/13-01/16. At baseline, treating cardiologists rated patients for perceived high risk for urgent transplant, LVAD, or death in the upcoming year. Patients also reported their own perceptions of life expectancy and willingness to undergo various interventions. Results: At the time of enrollment, the treating physicians regarded 111 of the total cohort of 161 patients to be at high risk for urgent transplant, LVAD, or death within the next year. After a mean follow-up of 13 months, of these 111 high risk patients, 45 (40%) patients experienced an endpoint with 8 (7%) transplants, 10 (9%) LVADs, and 27 (24%) deaths suggesting that physicians' perceptions of HF risk were reflective of the disease severity. Among physician-identified high risk patients, the majority (64%) of patients estimated a life expectancy of >2 years, and only 37% had discussed treatment options regarding life-sustaining therapies with their physicians (Table). Opinions on specific treatments were also incongruous as 77% of patients would consider LVAD, but many would have declined other more common forms of life-sustaining therapies such as ventilation, dialysis, and a feeding tube. Conclusions: Among non-inotrope dependent patients with advanced HF, physicians identified the majority to be at high risk for transplant, LVAD, or death. This was in contrast to HF patients' perceptions of their own disease severity. Patients expressed divergent responses regarding lifesaving treatments, possibly indicating poor understanding of these therapies. Given the high event rate in this cohort, earlier discussions regarding disease severity and treatment options are needed.