"It controls their lives, yet they don't even realize it," says Giordano. "Many people thought their health was pretty good. Because the progress of disease is so slow, over time they tend to compensate by limiting activities. In many instances, they're not even aware they are doing it."
Researchers also found that although patients and their physicians were optimistic about treatments for COPD, the realities of patients' lives told a quite different story. Patients were not living up to their own expectations, instead settling for a much more limited lifestyle than necessary.
More than one-third who fit criteria for "severe breathlessness" described their condition as "mild" or "moderate." One in four of the most severe patients felt their COPD had been "completely controlled" or "well controlled" during the past year.
"Many people just don't realize how much better their lives can be," Giordano tells WebMD. "With the right medications and rehabilitation -- getting people to exercise -- we can certainly slow progression of the disease, and greatly enhance their quality of life."
Too many of these patients may be seeing a primary care physician or internist, when instead they need a specialist in pulmonary care, says Gerard Criner, MD, chair of pulmonary and critical care medicine at Temple University in Philadelphia.
"A general care physician or internist may not have kept up with newer treatments or guidelines for categorizing the severity of the disease," Criner tells WebMD. "Many patients we see here are the sickest, and have not been maximizing their use of oxygen, and they're not optimizing their medications."
Criner is enrolling patients with moderate to severe emphysema in a clinical trial -- sponsored by the National Heart, Lung, and Blood Institute -- which will compare medical treatment to surgical removal of diseased portion of the lung.
Another government-funded trial will soon begin enrolling patients to study whether a form of vitamin A can slow progression of emphysema, Criner tells WebMD.