Amrut V. Ambardekar led a team of researchers who analyzed the vastly different perceptions of risk between advanced heart failure patients and physicians.

The study, which was published Aug. 16 in JACC: Heart Failure, is summarized here.

But Ambardekar, an assistant professor in the division of cardiology at the University of Colorado, went beyond the study in an email interview with Cardiovascular Business, contextualizing the research in greater detail and offering recommendations based on his team’s findings.

Cardiovascular Business: What inspired this study and guided your objective? Did any personal experience come into play for you and/or your colleagues?

Amrut V. Ambardekar, MD: The MedaMACS study enrolled 161 outpatients across 11 centers in the U.S. This was a previously understudied group of patients, with advanced heart failure on oral (but not intravenous) therapies. This is the group of patients where the risks vs. benefits of the advanced heart failure treatments of cardiac transplantation and left ventricular assist device (LVAD) therapy are unknown. Those of us in the field know that patients sicker than those enrolled in MedaMACS clearly benefit from transplants and LVADs and those healthier do not need LVADs and transplants.

Is the patients’ significantly low perceived level of risk common in other conditions as well, or is it especially off-base in heart failure patients?

Patients in other conditions sometimes do not appreciate their disease severity, and can over-estimate their life expectancy. Determining prognosis in heart failure patients is particularly challenging though, as patients’ disease trajectory is not linear but fluctuates with ups and downs. Meaning, sometimes patients are very sick, but we make an intervention and they can stabilize for long periods of time before having another decline.

Your study mentions the need to educate patients about treatment options at an earlier stage, well before treatment is needed. When is the appropriate time to broach this topic and in what manner would you recommend doing so?

In general, it is probably good to start the education process about advanced heart failure treatment options when there are markers of poor prognosis. The patients enrolled in MedaMACS had prior hospitalizations, poor measures of functional status such as short timed walking distances, and laboratory evidence of congestions. These are early signals that patients may not respond to conventional medical treatments. Because treatments like cardiac transplantation and LVADs are complex, it is better to have patients (and their family members) start the process of learning about these treatments so they have time to think about their options, i.e., better to hope for the best, but plan for the worst.

Based on the definitions of “high risk” and “low risk” in your study, physicians significantly overestimated the number of patients who might need a transplant, LVAD or die—to nearly the same level that patients underestimated it. Is this a case of doctors being overly cautious (and if so, should they always err on the side of caution)? Or is it more a matter of difficulty predicting outcomes with advanced heart failure patients?

I think this illustrates the difficulties in predicting prognosis in patients with advanced heart failure. The participating centers and clinicians in the MedaMACS study were well-experienced, reputable places. The fact that even the “experts” struggle in predicting outcomes is further evidence that we should err on the side of caution and present patients their options earlier.

What most surprised you about the study? Or did it largely affirm what you suspected going into the research?

One of the most surprising findings of this study was the high event rate in this group of patients previously thought to be “too healthy” for transplant or LVAD therapy. Longer term follow up of this same group of patients enrolled in the MedaMACS study was presented at the International Society for Heart and Lung Transplantation in April 2017. After a mean of 1 year of follow up, only 53% of these patients were alive on medical therapy (24% died, 11% required an LVAD, and 12% required a heart transplant). This suggests that clinicians should start the education process much earlier in the game.