Many patients with heart failure - especially younger ones and those with more severe disease - significantly overestimate how long they going to live, say Duke University Medical Center researchers.
"It's a bit of a puzzle," says Dr. Larry Allen, a cardiologist at Duke and the lead author of the study. "As physicians, we know how important it is to talk with our patients about end of life issues, but this study suggests we may need to take another look at how we might do that better."
The research showed that among 122 patients with heart failure enrolled in the Duke University Heart Failure Disease Management Program, the patients, on average, believed the would live about 40 percent longer than what accepted survival models predicted.
The study appears in the June 4 issue of the Journal of the American Medical Association
While the reasons underlying the phenomenon aren't clear, scientists say the finding may hold important implications about options such as high-end medical devices, transplantation or palliative care - important decisions that have enormous impact on patients' quality of life and clinical outcomes.
According to the American Heart Association, about five million people in the United States have heart failure, a condition in which the heart becomes weak and is no longer able to pump as much blood as the body needs. Despite advances in treatment options, the prognosis for patients with symptomatic heart failure is grim: Median life expectancy is less than five years.
Michael Felker, M.D., the senior investigator of the study and a member of the Duke Clinical Research Institute, says the finding is important on many levels.
"With the increasing availability of potentially life-saving but costly therapies, patients need to be fully aware of their prognosis in order to make appropriate decisions about their care. Our data suggest that is not happening, and that many heart failure patients do not have an accurate understanding of their likely survival," says Felker.
When researchers asked the patients to address the eventual outcome of their disease, 9 percent said they thought they would be cured, 51 percent said they thought they would have normal life expectancy and 36 percent said they thought heart failure would shorten their lives.