Many heart failure patients don’t recognize the risks of their illness

By Lisa Rapaport

(Reuters Health) - Even though doctors think most people with heart failure have a high likelihood of requiring a heart transplant or dying from complications of their illness, a small U.S. study suggests that many patients see a much rosier picture of their future.

In the survey of patients and physicians, doctors thought that 69 percent of patients were likely to die or need a transplant or what’s know as a left ventricular assist device (LVAD) to help their heart keep pumping within the next year.

But just 14 percent of patients expected any of these outcomes to happen to them, researchers report in JACC: Heart Failure.

“Part of this is that hope is human nature - patients think they will beat the odds,” said lead study author Dr. Amrut Ambardekar, medical director of the cardiac transplant program at the University of Colorado in Aurora.

Almost 6 million Americans have heart failure, and it’s one of the most common reasons older adults go to the hospital, according to the American Heart Association.

It happens when the heart muscle is too weak to pump enough blood through the body. Symptoms can include fatigue, weight gain from fluid retention, shortness of breath and coughing or wheezing. Medications can help strengthen the heart and minimize fluid buildup in the body.

A realistic assessment of a patient's prospects is needed to make decisions about interventions like heart transplantation or LVAD, the study team writes.

Unlike many other chronic health problems, the disease doesn’t progress in a linear way, and that may contribute to the mismatch in expectations between patients and doctors, Ambardekar said by email.

“Patients have a hard time knowing their odds for survival as they may have been at a low, but then responded to a treatment and stabilized,” Ambardekar said. “Patients may have been sick, but then responded to treatments in the past so they think they will respond again.”

For the study, physicians rated 161 patients on perceived risk for transplant, LVAD or death in the upcoming year. The patients rated themselves on the same risks.

Predictions by both patients and physicians turned out to be poor, the study team notes.

Overall, 21 percent of patients died during the study period. Another 8 percent got transplants and 9 percent received LVAD devices.

Researchers also assessed whether patients were willing to consider other life-sustaining therapies to treat advanced heart failure, such as ventilation to help with breathing, dialysis to do the job of failing kidneys or a feeding tube.

While 77 percent of the patients considered high risk by physicians said they would consider LVAD, 66 percent of them said they would decline other life-sustaining therapies.

Beyond its small size, another limitation of the study is that patients and doctors were surveyed only once, at the start of the study, and it’s possible their perceptions of risk and willingness to consider certain therapies or treatments might change over time, the authors note.

Even so, it suggests that there’s room for improvement in how doctors and patients communicate, said Dr. Roberta Florido, a researcher at Johns Hopkins University in Baltimore who wasn’t involved in the study.

“Whether altering one’s perception of their prognosis through enhanced information makes them `healthier or happier longer’ is unknown,” Florido said by email. “However, when patients are more knowledgeable about their prognosis and care options, they are more likely to make informed decisions about their goals and receive medical care that is aligned with their preferences.”

SOURCE: JACC: Heart Failure, online August 16, 2017.